Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :) [Archive] - Page 4 - The DIS Discussion Forums

Tink rules

02-28-2009, 01:33 AM

Hi all of you wonderful people out there :)

Yup yesterday was a long, long day, we were fried when we went back to the Mac house at around midnight.....18 hour day with all that going off, plus Bic and her really sore bottom having to be changed about five or thirty times an hour.....phew!!

Today after having a drug induced Ativan sleep overnight she was bright eyed and bushy tailed :) David didn't go in to work yesterday or today, so this morning he came across to the hospital at six-ish and I had a lie in until nine, David has now gone back to the Mac house for a little afternoon siesta in exchange for my lie in this morning :)

We still have the sore bottom going on, the sores on her bum cheeks seem to be holding steady but now she has developed really bad open sores around her anus which are really painful to her.

She is sleeping at the moment, I am typing one handed because she wont let my other hand go, bless her little cotton socks :)

She was happy this am after her nights sleep, very talkative and now starting to use her near normal voice instead of a whining voice.
She had speech therapy this morning and did really well. Her pastor was visiting her when the therapist came and Becca introduced them to each other:goodvibes

The heparin for the clot......the clot is quite large, they are saying that it may take a month to three months to totally disappear. The dose of Heparin they are giving is only really enough (therapeutic dose) to stop it from getting any bigger, they are hoping that the actually body "clot fighting cells" will do the job of breaking down the clot.
We do not know whether we will be keeping the PICC in the long term or not. As it stands at the moment every doctor Neuro surgery is asking is telling them that they advise against pulling the PICC for fear of dislodging the clot. Seeing as the clot is going to be under long term management and the Heparin is being administered long term through the PICC the question is a Moot one at this point.
The reason they didn't "focally" use a clot buster on the clot is because it would need a far higher mega dose of Heparin than they are willing to risk.
As it is, the heparin is a really low dose that she is getting now and they are still counteracting it with some clotting transfusions.

She now has an air bed :) We really only wanted a Donut for her to sit her bottom on but we somehow finished up with an air bed. Apparently they dont have donuts at this hospital.
She wasn't taking any advantage of the sports bed she was given so the air bed is getting a try out.
The air bed is neat though, it goes through these cycles where it pumps up little pillows in rotation so the body doesn't develop pressure sores. Shame that it doesn't come with a built in donut :)
We have had no complaints from Bic about the new bed so that is good.

The brain drain has been capped!!!! The rush CT she had last night came back showing that the ventricles had stayed a regular size with no swelling so it has been turned off. The plan is for her to have a CT on Sunday or Monday (who are we kidding, Sunday??We are on hospital time after all).
If the CT comes back good, they may or may not wait a couple of days and do another CT or they may just pull the drain at that point. Yay, no more brain drain please!!:woohoo:

Thats it for now, she is still sleepin' and hand holding, I am still sat here one hand typing with an aching back :)

Will speak again soon,
Love Mandy

Glad she is coming along!!! Hopefully she can get some relief from the sores... I know that cortizone will help the sores around the anus, see if they can try that - they have a prescription strength that will help.

Good to know she's talking and all...

Good Luck!!! :grouphug:

maroo

02-28-2009, 09:59 AM

We are still praying for Becca! :)

Sounds like she has had a good morning so far. I am praying for the brain drain procedure! I hope she gets it out very soon!

Becca looks so good sitting up!! :)

llurgy

02-28-2009, 11:10 AM

Hi all,
Just to put everyones mind at rest about the butt care :)

We are using a combination method at the moment for the two different kinds of bottom problems.

For the ongoing diaper rash - which is slowly getting better:

Four times a day she has some compresses placed with some mild acetic on them.
Also four times a day she has Nystatin powder dusted on the rash and covered with petrolatum based Maalox. The changes inbetween are just reated with Maalox.
The Anal area has a different procedure:
After wiping her butt clean with dry wipes that are wetted down with water she is sprayed in that area with Carraklenz, a dermal wound cleaner. Then Stomahesive powder is puff/sprayed there and finally on to of that is Proshield plus, a skin protection Gel.

So, her bum finishes up needing a person with a degree to change just a diaper :)

All the time we are doing this she is telling us to hurry. If we say we are hurrying, she says hurry faster :)

Shanka

02-28-2009, 11:19 AM

Ah poor sweet Becca. God bless that sweetie.

mom2lilnick

02-28-2009, 11:31 AM

I am so thankful that things are getting better. Praying for you guys always.

maroo

02-28-2009, 12:15 PM

Wow!! It sounds like you do need a degree to help get her freshened up!!! Whoa!

I hope all of that helps...sounds like it should!

And glad she is back to her old self some! :) "I am the boss of mum and dad" is hilarious! She gets it, doesn't she! :)

eyor44

02-28-2009, 09:26 PM

okay, so I won't send the Boudereaux's ;)

3princesses+aprince

03-01-2009, 07:18 PM

So glad to hear things are going well, except for the sore bottom:guilty: The air bed sounds nice!!! Glad to hear that she's talking alot.

maroo

03-01-2009, 07:25 PM

still praying!

I hope they are able to get that CT today (or have already gotten it!) and that it shows no more swelling so she can get that brain drain out! :)

Just wanted you guys to know that I am still praying for you guys. Think of you guys often! :)

llurgy

03-02-2009, 12:15 PM

The brain shunt is coming out today!!!!:upsidedow

She had a CT early this morning, all her ventricles look fine, the abscess has shrunk just a tiny bit more, still big but shrinking all the while.
The Neuro surgeon wanted to take the Heparin away for the pull, it only needs an hour to get out of her system but he is waiting 4 hours to be on the safe side, it will be withheld for an additional hour after the pull too.

No more brain drain soon.......cant wait!!!

She has two IV's in her left arm, one for antibiotics and one for drawing the labs that they need every 4 hours. The blood one flushes but wont pull so no more blood out of that one. The antibiotic one has lost its vein and all the meds were going into her arm so that IV has had to be pulled. They are now using the blood/labs pull one to administer the meds.

I don't know how they are going to get the 4 hourly blood pulls long term as they are not allowed to use her left arm for any sticks or IV's and she is running out of room on her left arm, she has needle tracks going up this one vein, it looks so bad.

Outside Butt is ok now, just inside her butt is still cramping or something so she is in some pain with that.

PT are still trying to fit her for a chair, they finally got her into a good position in it today, no skootching down, sat straight. The good position revealed that the back on the chair is way too low and consequently so is the head rest. The PT person is going to search out a bigger chair for tomorrow.

Speech is coming along brilliantly. We don't know where she is as far as mouth control. The speech therapist is going to try her with some yogurt in the morning, if that goes well she can then have a swallow test done to see what kind of foods she will be able to manage.

Thats it for now, just waiting for them to come soon to pull out the shunt.

Love
Mandy

jessica52877

03-02-2009, 12:35 PM

I am so glad to hear of more great news!!!!

maroo

03-02-2009, 12:38 PM

Woo Hoo!!!

No more brain drain!!!

:woohoo: :dance3: :banana: :banana: :banana: :yay: :cheer2:

I am so excited for her!! :)

We will keep on praying!! :) Thank you so much for the update! :)

design_mom

03-02-2009, 12:41 PM

Hooray! I'm so excited to hear about Becca's progress. I've been following along on schtabs.com

Sandy321

03-02-2009, 12:49 PM

still praying from afar - thanks for the updates!!

:wizard:

llurgy

03-02-2009, 01:16 PM

The brain drain is out!!!:woohoo: :woohoo: :woohoo:

A few tears and yells when they stitched the hole up, but it is finally out :)

maroo

03-02-2009, 01:25 PM

thank You, Lord. Seriously. Thank You!

We are still praying! I am so excited it is out!!

:banana: :banana: :banana:

feedthebirds

03-02-2009, 01:44 PM

Wonderful! What great news. I am so glad to hear of Becca's progress. I have been following on the schtabs site. Still praying.

eyor44

03-02-2009, 02:06 PM

I don't know how they are going to get the 4 hourly blood pulls long term as they are not allowed to use her left arm for any sticks or IV's and she is running out of room on her left arm, she has needle tracks going up this one vein, it looks so bad.

Maybe her foot? When my DS was in ICU they finally went to his foot or ankle for an IV.

The brain drain is out!!!:woohoo: :woohoo: :woohoo:

woohoo! woohoo!:cool1: :cool1: :cool1: :cool1: :cool1:

teresajoy

03-02-2009, 03:14 PM

Mandy, that is wonderful news!!! :cool1: :cool1: :cool1:

kimmylaj

03-02-2009, 03:20 PM

go becca go that is all such good news

MaryAz

03-02-2009, 03:41 PM

Great news!! :banana: :banana: :banana:

p00h4me

03-02-2009, 04:42 PM

Yeah!! Happy to hear that!

p00h4me

03-02-2009, 04:43 PM

Hi Mandy,

I got your PM but I need to get up to 10 posts to reply back.
Gail

p00h4me

03-02-2009, 04:44 PM

Glad to hear that Becca's outside butt is better. Hope the cramping part goes away soon!

p00h4me

03-02-2009, 04:47 PM

Hope the new chair will prevent any more "scooting" from Becca!

p00h4me

03-02-2009, 04:48 PM

We'll keep you all in our prayers!

p00h4me

03-02-2009, 04:49 PM

OK. This should make my 10th post. I need to come out of lurkdom more often I guess. hahaha

p00h4me

03-02-2009, 05:08 PM

Hi Mandy,
I was finally able to post a reply back as a PM. I'm so glad the package arrived and Becca enjoyed the items. I'll try to remember to check for PMs every now and then. I'm still more of a lurker on the boards than a poster!
Gail

tinytreasures

03-02-2009, 05:57 PM

what wonderful news about the drain :lovestruc

Tnkrbelle565

03-02-2009, 06:17 PM

Great news Mandy!!!

Donald is #1

03-02-2009, 07:48 PM

Wow, I haven't been on a few days and it seems like Becca has made a lot of progress. Yay!!! :dance3:

jenb1023

03-03-2009, 08:19 AM

I haven't checked the thread or website since yesterday morning and look at everything I missed! Here is my happy dance for the removal of the brain drain, the improvement in the butt area and the big advances in speech - :cool1:

Thanks for the wonderful update Mandy!

twinmum

03-03-2009, 08:23 AM

Wonderful news - I am so happy to see so many signs of progress!

Alison

llurgy

03-03-2009, 09:08 AM

Thank you all for the continued good wishes.
It is so good having our little girl back with us. We still have the occasional cries and moans with the butt cramps and the vampire rounds but her overall demeanor has changed lots, even her sense of humor is returning which pleases David no end as he really gets a kick out of teasing her.
When she takes naps during the day we wish her "night, night", she says no, "day, day" with a big silly smile on her face.
The fire alarm has just started sounding somewhere in the hospital and shes laid in bed with a smile on her face saying "fire, fire, run for your lives":lmao:

iu97alum

03-03-2009, 09:17 AM

GOOOOOOOOOO Becca!!! WHOO HOOO!!

twinmum

03-03-2009, 10:06 AM

I am thrilled to hear that she is cracking you up! You must be so happy!!!

I remember when Mark had surgery to redirect the flow of saliva in his mouth (basically to stop his persistent drolling, at age 5). It was painful for him, and his mouth swelled up in such a huge way that he could not speak. He is incredibly verbal and was very advanced in his speeach at that time. To have him unable to communicate was dreadful for him, and for me. I had always harboured this fear that something bad would happen with his speech with this surgery and I waited and waited for his first clear words.

they came on my birthday. we were still in hospital and he realized that no one had done anything to celebrate. So...he insisted on singing me Happy Birthday, then playing the "are you 1? Are you 2?' game...except it soudned like "ah oo uh, ar oo poo", and I know it hurt. I kept telling him it was OK to stop, but he wouldn't. That little sweetheart went all the way up to 43!!!

What a relief to see our children coming back to us!

I'll keep praying!
Alison

maroo

03-03-2009, 10:09 AM

vampire rounds...

If it wasn't so horrible, it would be hilarious! Vampire rounds...:rotfl2:

Even her sense of humor is returning which pleases David no end as he really gets a kick out of teasing her.
When she takes naps during the day we wish her "night, night", she says no, "day, day" with a big silly smile on her face.
The fire alarm has just started sounding somewhere in the hospital and shes laid in bed with a smile on her face saying "fire, fire, run for your lives":lmao:

:rotfl2: :rotfl2:

Tell her we will send the firemen to save them all!! :firefight

:rotfl:

I am so, so happy that Becca is back!!! Woo Hoo! :woohoo:

llurgy

03-03-2009, 02:28 PM

Becca has finally had her hair all cut off, she is so relieved to get rid of it after all of this time.
Nearly four weeks of it being matted and knotted with who knows what was in it.
Two nurses, Lord knows how many standby-ers/watchers and 30 minutes later and hey presto Becca has a cute little pixie cut :)

She says she feels so much better now because her hair doesnt pull every time she turns her head just a little.

Mandy

maroo

03-03-2009, 02:42 PM

Ah...:cloud9:

That makes me feel better for her just thinking about it!

Do we get a picture of her new haircut? :)

I am so glad she is doing so well!!!! :)

coteau_chick

03-03-2009, 04:00 PM

I bet Becca's hair will grow back even more beautiful than it ever was. I am soooooooooooo glad to hear she is doing better. I have been praying for her and so has my mom.

jenb1023

03-03-2009, 04:04 PM

I bet she looks great in her new pixie cut! I am so glad that all of the updates lately have been good ones!

p00h4me

03-03-2009, 04:36 PM

I'm glad that Becca is feeling better having her hair cut. I'm sure she looks really cute. She can always let it grow back out again! Glad she's back to her old sense of humor! I don't blame her about not liking all those pokes every day. I wouldn't want them either!

llurgy

03-03-2009, 04:36 PM

Ah...:cloud9:

That makes me feel better for her just thinking about it!

Do we get a picture of her new haircut? :)

I am so glad she is doing so well!!!! :)

A picture will be posted on the web site tonight hopefully.......Have to wait until David gets here as I am not sure how to do it.

revrob

03-03-2009, 08:06 PM

I'm so glad to hear that Becca has made such great progress! I saw the pics of the haircut and wondered what was up - I'm glad it's given Becca some relief. Seeing pics of her beautiful smile were so refreshing. Thanks for the updates.

jham

03-03-2009, 08:27 PM

It is so good to see that smile again!

eyor44

03-04-2009, 09:27 AM

I had to run right over to the web site to see what was up. Wonderful to see Becca smiling! I am really glad to hear the hospital uses the Emla cream. I personally know how well it works. Unfortunately, our hospital refuses to administer it.
Such wonderful progress. Keep up the great work Becca!:thumbsup2
Mandy still praying for you all.

llurgy

03-04-2009, 02:51 PM

Becca is down in ultrasound again (with her daddy this time) we fear that she may have yet another clot - on the left arm this time. It has started to turn blue when it is dropped into normal down position when she is sat up. We discovered this whilst she was in (Boot Camp) PT. She spent most of PT with her right arm propped on pillows and her left being held up by me, Dad or a therapist.
She has also developed a swelling behind the region of her right knee.
They are supposedly going to be scanning both arms and both legs, last week when they found the right arm clot they scanned both legs and her right arm and that took two and a half hours so I have no idea how long this is going to take.
They went off the unit whilst I was eating lunch but David left me a message saying they were going down at 1.10pm, it is now 3.25pm and they are still down there.
Still having GI issues with lower (we think) bowel pain more or less constantly, awaiting the GI docs to talk about it.
Still also having the low to mid grade headaches, neuro has a CT scheduled for tomorrow, he says if her ventricles are enlarged to a good extent they will probably have to put in a new drain, heres hoping the headaches she has are just mild headaches and nothing else. The abscess is still there, though smaller, so it could be that causing the headaches too.

Because of the unscheduled ultrasound the swallow study has had to be postponed - it was supposed to be at 2pm. Hopefully they will be able to fit her in sometime tomorrow.

Love
Mandy

jenb1023

03-04-2009, 03:14 PM

Oh Mandy! I am so sorry to hear all of that! I really thought things were looking up for Becca and you guys. I will pray that the ultrasound shows no new clots and that the CT tomorrow is okay. :hug: Jen

mom2lilnick

03-04-2009, 03:47 PM

I hope the ultrasound goes well. Hugs!

eyor44

03-04-2009, 04:55 PM

Two steps forward and one step back.
I am praying that no new clots are found also. and perhaps the headaches are just from lying down so much. :grouphug:

TwistofLemon

03-04-2009, 05:23 PM

So sorry to hear that, Mandy
:hug:

Thanks for all the updates on the website. The latest pics are great. It's good to see that smile!

revrob

03-04-2009, 05:25 PM

I'm sorry to hear this newest development. I know it must be discouraging to you all. Hang in there - we're all still praying!

twinmum

03-04-2009, 06:21 PM

Mandy: So sorry about the challenges today - as someone else said - 2 steps forward, 1 step back. That's what I remember so clearly about our time in the NICU with our twins (born at 26 weeks). It was always a roller coaster ride, you felt joy for each positive step, but prepared yourself for the long haul. But if you think about the progress Becca has made in the last week, it's amazing!

We're praying for all of you.
Alison

teresajoy

03-04-2009, 06:37 PM

Oh Mandy, I hate that you are going through all this! I want to take away all the pain for all of you! But, the best I can do is pray, pray pray!

Brian asks for a Becca update everynight. So, everynight after the kids are in bed, we check your website to see how she is doing. He has his whole store praying for Becca!:hug:

llurgy

03-04-2009, 07:22 PM

The ultrasound came back clear on all the new places, both legs fine and her left arm fine. They think her arm may just be very positional and delicate, we will just have too keep an eye on it. The swelling at the back of her right knee is under observation too. We are just relieved that there are no more clots!
The existing clot has grown no bigger and may have even shrunk just a tiny bit.

Becca is now asleep after another exhausting day, the poor little love, sometimes she just looks so tiny and so very helpless.

Tomorrow the brain scan to see if her ventricles are coping without the brain drain. If the ventricles have enlarged to any great extent she will have to have another drain placed back in her head. Fingers, toes, legs, and eyes crossed that the brain is okay and that she can remain drainless.

Roll on tomorrow, hoping that a fresh day brings more health and happiness back to our BicBicBeccaBaby

eyor44

03-04-2009, 07:41 PM

Praise God! No new clots!:yay: I am so thankful as I know you and David are. Prayers of thanksgiving tonight and that no new drains will be needed tomorrow.

jenb1023

03-04-2009, 08:21 PM

Thank goodness for no new clots! :cool1: That is great news!
I will keep hoping and praying for a good CT tomorrow.

miprender

03-04-2009, 09:07 PM

Just read the updates and I love seeing your daughter smiling again in the pictures. :hug:

MAGICFOR2

03-04-2009, 11:50 PM

Mandy, thanks for keeping us updated. I haven't been able to post at your website - I can't find the right place. I did register. Anyway, I'm glad that her botom issues are better - didn't get anything sent, I was having trouble with finding the main address, then it dawned on me, I could google the hospital, but I see you have it solved for now.

Praise God Becca doesn't have new clots! I'll be praying for good news tomorrow! I'm off to see the haircut pics.

P.S. Never mind...I found it! I'm a little slow LOL!

llurgy

03-05-2009, 12:25 PM

If anyone who has registered on the website wishes to post a comment here are the instructions on how to do so.

How to post comments? It is possible to post comments right on the web site. It's not a forum, so you can't start a 'thread' and be aware that the gallery is public, so anyone can read your comments. To post a comment there, you need to find the speech bubble with a plus in it ("Add a Comment" will come up when you hover over it). It is at the top left of the page, there are 4 icons and it is the 2nd icon along.

You can also comment on individual photo's by a similar process. Navigate to the photo and open it, it is the first icon of 3 along the top of the image, look for the speech bubble with the plus in it.

Becca's CT scan came back okay this morning, no brain drain required for the moment, Neuro implied that he would schedule other CT over the coming weeks to make sure that her brain stays stable.

We just have the swallow test now this afternoon to see if she can tolerate food and water. She does realize that the barium isn't going to be nice, its going to be flavored with chocolate so that should make it a little more palatable. Plus she knows she has to do well and try to swallow the stuff if she ever wants to drink water or have Ice Pops.

AlohaPolynesian

03-05-2009, 12:35 PM

I am really enjoying your pre-trip, but I'm sorry to hear everything you're going through lately. Becca is SO CUTE - I can't get over it!!

maroo

03-05-2009, 01:01 PM

I am so glad about the clots!! :)

And so thankful that Becca is going to be able to do that swallow test. Hopefully she will pass with flying colors! If she can get that barium down, then she should be good to go with just about any food out there! :rotfl:

I am so thankful that she is doing so much better. Just think how far she has come!! :)

Still praying!! :)

eyor44

03-05-2009, 04:38 PM

Becca's CT scan came back okay this morning, no brain drain required for the moment,
We just have the swallow test now this afternoon to see if she can tolerate food and water. She does realize that the barium isn't going to be nice, its going to be flavored with chocolate so that should make it a little more palatable. Plus she knows she has to do well and try to swallow the stuff if she ever wants to drink water or have Ice Pops.

:yay: No brain drain needed!:yay: More prayers of thanksgiving.

:cheer2: wonderful Becca!:cheer2:

llurgy

03-05-2009, 05:01 PM

The swallow test didnt go all that well. She tolerated the yogurt ok but when it came to the Barium smoothie she couldnt stomach it. She swallowed it but her stomach revolted and threw it back up. This was the chocolate smoothie. They asked if she was prepared to try a thinninsh mixture made with barium and strawberry nesquik instead of chocolate.......our little trooper said yes even though she had just thrown up, bless her, she is so brave.
They found that the mixture was pooling at the back of her throat before the swallow reflex kicked in. It was pooling for too long over her open windpipe so they are not going to allow her water or ice until her swallow reflex reacts a little better.
She was upset as she thought it was her fault she had failed and she was so looking forward to some lovely wet water, ice or ice pops.
She was reassured by everyone that she had been very brave to do more tests even after all that throwing up and that she couldn't have possibly have done anything more.
She is allowed yogurt and the speech therapist is going to thicken up some apple juice and freeze it into Popsicle's which she will have an attempt with tomorrow at her therapy session tomorrow.

She is in good spirits at the moment, watching Ice Age DVD and laughing away

Love
Mandy

jenb1023

03-05-2009, 05:47 PM

:banana: for no more brain drain for now!

Sorry the swallow test did not go better but I am thrilled to hear she is in good spirits!

jenb1023

03-05-2009, 05:58 PM

portocall

03-05-2009, 06:41 PM

I just spent the whole day catching up on your thread... having been a Villiage sibling, those tend to catch my eye. My prayers are with Becca, you and David for continued recovery.

AlohaPolynesian

03-05-2009, 06:53 PM

Sorry to hear about that swallow test. She does seem like a trooper, that's for sure! Glad to hear she is in good spirits watching the movie. She sounds like an amazing little girl!!

llurgy

03-05-2009, 08:12 PM

I just checked the website and I love the new photos! She looks great and seeing her sitting up playing connect four and drawing is a wonderful thing to see!

I also loved seeing all of her pictures and photos hanging on the walls in the background! My DD is sure she spotted her drawing of Sully and Mike hanging on the wall that she "sent to Becca to look at to make her feel better."

Yes, thats the drawing, Becca loves it and it is just under the TV so that she can see it easily whilst laying in bed :)

Becca says thank you for her picture and that it is a really good drawing :)

TwistofLemon

03-05-2009, 10:12 PM

MAGICFOR2

03-05-2009, 11:31 PM

So wonderful that Becca doesn't need a drain!:yay: The yogurt is progress, and she will get to the water and ice soon!:thumbsup2

joy13

03-05-2009, 11:58 PM

I just stumbled upon this report and am taken in by this journey you are all on. I am in awe of your whole families strength! You are an inspiration and will continually be in my prayers.

llurgy

03-06-2009, 08:29 AM

We had a rude awakening this morning with the phone ringing just before 6am (about 5 minutes before the alarm was due to go off). It was Becca's night nurse saying that Becca was due down in intraventional radiology at 7am if we were planning to go down with her. She was scheduled to have another PICC line placed in the other arm.
We were astounded as we had not been told that another PICC line was being placed. Apparently the orders came through yesterday around shift change time for the nurses so the orders must have slipped through the cracks. Regardless of whether the nurses did a whoopsie we were not consulted at all on this by any of the doctors before the order was even put in!
We told the nurse that called that we did not want Becca getting another PICC without a consult and that she shouldn't be taken down to radiology.

Discussions with our neuro have since taken place

We talked about the PICC line saga and he said that he had had a call from the practitioners asking whether he had any adversity to the running another PICC for the easier administering of the antibiotics and blood draws. He said that he told them he was fine with it thinking that once he had approved they would get back to us and discuss another PICC option. He thought they were just getting their ducks in a row before approaching us. He was really annoyed that it hadnt been discussed with us and he was going to make sure that they were "told" about their lack of communication with us.
He doesnt see that another PICC will do any harm in essence as far as the clots are concerned, but he understands our concern about her developing another clot especially as her non PICC arm is already showing signs of bad circulation.
He says the normal procedure with clots is to pull the line whilst having the heparin (a much larger dose which Becca cannot have)and the clots usually dissipate faster without the line being there and there are no problems, but in Becca's case he knows that option has been explored and dismissed as she runs the risk of the clot ending up in her brain if it is dislodged.

We have left it so she can have more IV's placed if needed (she will need because her existing one is on its way out I think) and hold the PICC for now as all it was being placed for was to save sticking her with needles. He says if we change our mind about the PICC we can let him or someone know but he believes that carrying on with the IV's for now is workable as long as Becca is able.
Hopefully this will only be for a few more weeks, if her brain gets the all clear we should be able to go onto oral anti-coagulants.
Dr Grondin was just in.
We talked about the PICC line saga and he said that he had had a call from the practitioners asking whether he had any adversity to the running another PICC for the easier administering of the antibiotics and blood draws. He said that he told them he was fine with it thinking that once he had approved they would get back to us and discuss another PICC option. He thought they were just getting their ducks in a row before approaching us. He was really annoyed that it hadnt been discussed with us and he was going to make sure that they were "told" about their lack of communication with us.
He doesnt see that another PICC will do any harm in essence as far as the clots are concerned, but he understands our concern about her developing another clot. He says the normal procedure is to pull the line whilst having the heparin (larger dose) and there are no problems but in Becca's case he knows that option has been explored and dismissed.

We have left it so she can have more IV's placed if needed (she will need *** this one is on its way out I think) and hold the PICC for now as all it was being placed for was to save sticking her with needles. He says if we change our mind about the PICC we can let him or someone know but he believes that carrying on with the IV's for now is workable as long as Becca is able.
Hopefully this will only be for a few more weeks, if her brain gets the all clear we should be able to go onto oral anti-coagulants.

The oral anti-coagulant will only come into play once he feels her brain doesnt need anything else doing to it. He feels that he needs another few weeks to establish whether or not she will be drain free. The oral meds mean that he would have to wait much longer for them to clear out of her system once on a regular dose and heparin would still have to be used as a bridge and then the heparin would have to be stopped too, a long process to wait through if she has to have any procedure on her brain.

So we are in a holing pattern just for now. The PICC hasnt totally been ruled out but we would like to try and hold out.

3princesses+aprince

03-06-2009, 11:24 AM

I havn't been on in a few days, and oh my so much has changed.
I'm so glad to hear that the brain drain is out and there were no new clots anywhere else. and glad to hear the brain CT came back good !!!!! Excellent news.

Tnkrbelle565

03-06-2009, 11:37 AM

Poor Becca. Still saying daily prayers for your family. :hug:

eyor44

03-06-2009, 10:12 PM

Glad to read on the web site that Becca had a good day today.

jenb1023

03-07-2009, 07:34 AM

I can't believe they tried to put in a new picc line without you!

I was so glad to read on the website that she had a good day! I am sure she is thrilled to start being able to eat a few things. I bet her hair looks really cute now that it has been cut and washed.

Becca says thank you for her picture and that it is a really good drawing :)

I just told Jordan what Becca said and you should have seen the smile on her face - - she loves "big" kids so Becca saying that made her day.

twinmum

03-07-2009, 07:52 AM

I'm fuming at the thought of them even thinking of doing the PICC line without consulting you! You are such educated advocates for Becca, and they would be fools not to ensure that you are always an essential part of the decision-making. I'm glad that your views were eventually heard.

I continue to pray for steps forward, and for strength and peace for all of you.

Alison

bettyann29

03-07-2009, 07:58 AM

Ive been following your PTR and just recently came back to it and read the update.. just wanted to tell you that I am so sorry for all that Becca is having to go thru..

Your family is in my prayers.. Heres hoping for a speedy recovery..

TwistofLemon

03-08-2009, 09:40 PM

WOW!!!! How great to see the latest photos! WOW!!!!! Good job Becca spending all that time touring the hospital. And, you've done us proud...spending your time SHOPPING! LOL, You go girl!

Stay Strong!!

Khalana

03-08-2009, 09:48 PM

How awesome to see her beautiful smile again!!! :yay: I love her colorful blanket. :) And who made her that cute doll? Or was it made like that? So cute! :goodvibes

HeatherSue

03-09-2009, 08:47 AM

I just looked through the newest pictures and it does my heart good to see that gorgeous smile again! I'm so glad she was able to get out of the room for a little while!

jenb1023

03-09-2009, 11:28 AM

I was thrilled to hear about Becca's good spirits and that she got to leave the room and wander the hospital a bit! :cheer2: I also love the new photos!

I hope they can figure out why the oxygen sats were low.

jham

03-09-2009, 12:16 PM

Great photos! I especially love the drawing of Pooh, Piglet and Tigger! pooh:

jessica52877

03-09-2009, 02:23 PM

Great photos! I especially love the drawing of Pooh, Piglet and Tigger! pooh:

Weren't all the pictures so cute! I LOVE kid art! Becca looked great! She is really starting to look like herself. She looked happy too (hope she was).

Tnkrbelle565

03-09-2009, 02:57 PM

Yay!!! So happy to see her up and around. She looks great :cheer2:

fairygoodmother

03-09-2009, 07:27 PM

I just visited Becca's site for the first time in several days and I ecstatic! Praise God for the smile on Becca's face, the sitting up, the haircut, the drawings, the popsicles, the trip around the hospital...ALL of it!!
I am so pleased that she's doing well. Love, love, love, the pics with her new little doll! And I can hardly see the pic of Bics and her mum through the tears. You both look so happy...I pray that you are! God's continued blessings are asked for you each day!!

llurgy

03-10-2009, 08:54 AM

Hello Becca and family, it's so great to hear you're in good spirits! Sorry to hear about the swallow test results, but it sounds like you have a lot of very caring people helping to take care of you. I'm actually wishing for one of those apple-juice pops myself, sounds yummy! :thumbsup2

It's nice to see the new photos, your room is looking so cheerful. You've got what looks like a good collection of cards and gifts! :yay:

I'm the one who sent the flannel pillow cases, happy to see them being put to good use. Would you like some more?

Becca loves the pillow cases, unfortunately the two you made and the one HeatherSue made are now int he laundry basket as she threw up last night all over them.....whoops.
She has a lot of meds by her NG tube and they are told by her to push them Veeeerrrrrry slowly otherwise she gets sick. Well last night they didnt push them slow enough.....whoops, messy bed time.
She said to them "Told Ya" :)
So she is pillowcaseless at the moment and she doesn't like it. I have to hurry and wash them :)

Mandy

twinmum

03-10-2009, 08:56 AM

"Told ya"...how wonderfully, typically filled with humour! It must bring you such joy to have the real Becca back!

continuing to pary for all of you...

Alison

llurgy

03-10-2009, 09:55 AM

How awesome to see her beautiful smile again!!! :yay: I love her colorful blanket. :) And who made her that cute doll? Or was it made like that? So cute! :goodvibes

The doll was sent by Carla (loviesmommie I think was the user name, sorry Carla, I dont quite remember)

Her name is Little Becca and our Becca loves her. Becca doesnt like Barbies or regular dolls, but she likes the rag doll kind.

When she had her bed linen changed the other day we found about ten minutes later that Little Becca had lost a shoe. We had to search through the laundry hamper for little Becca's shoe. We found it about halfway down.

Mandy

eyor44

03-10-2009, 12:30 PM

Mandy
Please thank David for posting all of the pictures and updates. It's so wonderful to hear and see how Becca is doing each day. Her progress is amazing, but you know that. Will keep praying for you all.

jenb1023

03-11-2009, 08:22 AM

Hi Mandy!

I am so thrilled to hear how long Becca has been able to sit up and support herself and that she wanted to try to stand and did! :cheer2:

It is so great to read about all the progress she made and I love the picture of her with Ainsley!

Hugs to all of you!
Jen

teresajoy

03-11-2009, 08:48 PM

The doll was sent by Carla (loviesmommie I think was the user name, sorry Carla, I dont quite remember)

Her name is Little Becca and our Becca loves her. Becca doesnt like Barbies or regular dolls, but she likes the rag doll kind.

When she had her bed linen changed the other day we found about ten minutes later that Little Becca had lost a shoe. We had to search through the laundry hamper for little Becca's shoe. We found it about halfway down.

Mandy

The pictures of Becca were so wonderful to see!!!
I'm so glad she liked Little Becca! Carla is a sweetheart!!!

maroo

03-12-2009, 10:42 AM

Becca is looking AWESOME!!

I have been keeping up on the blog and am so happy to see the smile on her face.

I love hearing about the things she is saying to you guys and to the nurses. She is so cute!! And so funny!

I just wanted to drop you guys a note...we are still praying for sweet Becca!! :)

FSUDisneyGirl

03-12-2009, 09:35 PM

i am always thinking about becca. i haven't read the updates in about a week...i'm so glad to hear that she is getting back to her old self! what an awesome kid! :cool1: :thumbsup2

llurgy

03-13-2009, 06:59 AM

Thanks everyone for your continued prayers for Becca, we have a few downs but we are getting more ups to go with those downs.
Everyday I will post the blog from the evening before/or the same day as that help you all to keep track easier.

Yesterday went like this.....

Today Becca had another CT scan of her brain. This CT would enable the surgeon to make the decision about whether or not he could release Becca onto a different form of Heparin. If everything in her brain is stable then he can go ahead and release her, if not he wants to keep her on the IV Heparin in case he has to perform surgery on her head again.
The surgeon came to see us at around 11.30am saying all looked good on the CT and that he was quite confident in allowing the removal of the more controlable IV Heparin to the one that was a bit harder to manage. The new Heparin like drug will be administered via a shot in the belly area, kind of like an insulin shot. Although it isnt as easily withdrawn as the IV Heparin it is still easier to withdraw and manage than an oral blood thinner.
One of the stipulations of her going onto the Rehabilitation side of the hospital is that they wont take her whilst she is on Heparin IV, so them taking this away will be a giant leap in the right direction. A big bonus is that when the Heparin is taken from IV status it "should" free the PICC line up. With the PICC line free they should be able to take all her blood draws and administer all her meds through it as that was what it was originally placed for.

She is feeling a bit crappy today. She is keeping her oral meds down but her belly still feels nauseous all the time. She also got a headache this morning whilst she was sat in her chair, add that to the pukey feeling and she was not a happy camper. She is asleep at the moment (12 noon) and hopefully she will feel a little better when she awakens and she is ready to face her torture sessions of PT/OT and speech this afternoon.

Speech and OT/PT went fine, they took it gentle and only made her walk 5 steps to her chair :)
She then had to walk the five steps back to her bed an hour later, she doesnt mind that so much as it is going back to her comfort zone.....her bed.

She had her first Sub-Q shot of blood thinners this afternoon. She worried herself stupid from the time they put on the numbing Emla cream to when they did it 90 minutes later. Mandy had to explain to her that she had to have these shots 2 times per day for maybe 6 months. She was not happy to say the least, sobbing her eyes out she was, Mandy felt so sorry for her. She then found out that we would have to administer the shots when she got home and that made her even more upset. When given the choice of having to stay in the hospital for 6 months she gave in gracefully so long as we practiced for ages before we experimented on her.
Mandy has been practicing on an orange to give the shots, she is quite adept at the orange but says she will be scared when it comes to sticking the needle in Becca.
All this means that we MAY be moving over to the Re-Hab side tomorrow.....I say MAY because we all know what hospitals are like at saying one thing and doing another.

Becca has spent most of the day sleeping, she says she is tired because she isnt getting all that much sleep at night. She says there is always at least one baby crying somewhere on the ward. There have been a lot of babies having neurology testing done, it seems that as soon as one is released, another comes to take its place, poor babies, poor Becca and her sleep. The main problem is the nurses dont like the doors closed at night-time so the crying is really loud. Becca is hoping they dont have any babies on the re-hab side and that she is never going to have a baby because all they do is poop, throw up and cry with a little bit of sleep in-between. :)

maroo

03-13-2009, 08:55 AM

Rehab!!!

:dance3: :banana: :banana: :banana: :yay: :cool1: :cheer2: :cheer2:

That rocks!

I bet there won't be any crying babies in Rehab...and maybe they will let her keep her door closed? :confused3

MAGICFOR2

03-13-2009, 10:14 AM

I'm so excited to see that Becca may be "movin on up!" Continuing to pray for her.

jmskinner

03-13-2009, 11:47 AM

Oh, I hope she gets to move to rehab tomorrow. I can't imagine any babies being there.

Your whole family is in my thoughts and prayers.

llurgy

03-13-2009, 04:23 PM

Well we moved to Re-Hab at eight this morning!!!!:goodvibes

They have been doing evaluations for the most part so she hasnt had much hard work to do today. They let her have a real bath this morning which she loved though she was just a touch disappointed not to be able to put her whole body in the bath, they sat her in a chair because she is unable to hold herself up for a long time, not long enough to bathe anyway.

We have done the usual, seeing countless new doctors and answering the same questions over and over......all positive though as they are rehab based, still medical but more to do with her stamina/oxygen issues versus the fallout from the brain abscess. We have been told that the time spent on re-hab is generally 4 weeks with a 'very strict' early parole for really brilliant work.
So if Becca does okay we will be here for the duration, if she works really, really hard we could get out earlier. Where any form of exercise is concerned Becca is one of those that will only do the minimum, so we expect to be in here for the duration :rotfl:

We have to have a pulmonary function test on Monday and a heart echo. They want to know how safe it is to push/how hard and for how long in her rehabilitation sessions. So Monday is going to be another easy day as far as exercises go.

One bad thing we learnt about the PICC line is that they are unable to draw from it, it pushes fine when they want to administer but it wont draw blood so it looks as if we are stuck with the IV's.:sad2: :sad2:

On the re-hab unit they are quite regimented. The aim of the unit is to get the child back in the stride of daily living, so meals (when she gets to eat again) are a strict 9am, 12pm and 5pm. Visitation hours are also restricted. On weekdays she isnt allowed visitors in the daytime, we can have visitors after 5pm and at weekends, Saturday after 12pm and all day Sunday.

So YAY!! We are on Re-Hab:banana: :banana: :banana: :banana: :banana:

maroo

03-13-2009, 04:41 PM

Way to go Becca!!!!!!!

You are well on your way to recovery! And I know your Mom and Dad and all of your friends are so excited for you, too!!!!!

:banana: :banana: :banana:

And...

Guess what landed in my mailbox this afternoon?!?!

Your CARD! Evidently my friends at the front desk only put the minimum postage on there and it needed some more...so it got sent back to me! Yea!!!!! :)

I have never been so excited to get anything back in my whole life!

:)

So, I will send it out again on Monday! This time I will postmark it!! :thumbsup2

So...my faith in humanity has been restored for the time being...since no one stole from Becca!!! :thumbsup2

It will be a "congrats you are in rehab!" card! :)

eyor44

03-13-2009, 06:11 PM

:cool1: woo hoo on rehab!:cool1:

llurgy

03-13-2009, 08:33 PM

Yay for the meanies at the USPS!!!! :rotfl: :rotfl: :rotfl: :lmao:

Love
Mandy

Way to go Becca!!!!!!!

You are well on your way to recovery! And I know your Mom and Dad and all of your friends are so excited for you, too!!!!!

:banana: :banana: :banana:

And...

Guess what landed in my mailbox this afternoon?!?!

Your CARD! Evidently my friends at the front desk only put the minimum postage on there and it needed some more...so it got sent back to me! Yea!!!!! :)

I have never been so excited to get anything back in my whole life!

:)

So, I will send it out again on Monday! This time I will postmark it!! :thumbsup2

So...my faith in humanity has been restored for the time being...since no one stole from Becca!!! :thumbsup2

It will be a "congrats you are in rehab!" card! :)

jenb1023

03-13-2009, 08:39 PM

:banana: :dance3: :cheer2: :cool1: :yay:
I am so happy to hear Becca moved to rehab!!! One step closer to you all getting home!

twinmum

03-14-2009, 08:43 AM

Hooray for rehab and taking those steps closer to home!

Alison

Tnkrbelle565

03-14-2009, 08:53 AM

So glad that she was able to move!!!! :banana:

llurgy

03-14-2009, 11:06 AM

Today's report so far:

Rehabilitation is very different. The emphasis is on having a good night's sleep in preparation for a hard day's work.

Everything was quiet until 8am. Bic was asleep and the ward was quiet. Then began a precession of people into the room. Lt. B. Camp was amongst them. "Straighten those legs girl!" "Why haven't you eaten - how can you eat meat if you don't eat your pudding?" "We're going to make your life in here miserable" "Get out of bed and do 20 press-ups" :lmao: :rotfl:

The neuro surgeon also stopped in. He commented on the last CT scan done during the week. He was pleased that there was no swelling of the ventricles and said that the abscess measured about 3.5 cm, unchanged from the previous CT scan.

At 8.30 sharp, Bic had her first project - sit up in bed and color a picture. At 9.00, PT came in and put her through her paces. She had to get herself out of bed (with some help) and walk over to David to give him a hug and a kiss. This was at the request of Bic because he had missed out on this during the week. After getting back into bed, she was asked to get back out and stand using a walker whilst the bedding was changed. As soon as all that was over, OT made their visit. This was a bit more relaxed, squashing clay and doing some stretching and movement exercises in bed.

As fast as the day started, it suddenly quietened down and there stream of people into the room stopped. Bic had a headache after all this activity and just wanted to rest (better still, sleep).

The poor tired little baby fell asleep about 10.30am and is still asleep now at 11.50am - Well she could also be pretending to sleep to avoid having to eat her yogurt :)

maroo

03-14-2009, 11:18 AM

eyor44

03-14-2009, 01:02 PM

wow! didn't realize they would do stuff on the weekend with her. That's great. :thumbsup2

gcast1

03-14-2009, 05:13 PM

What wonderful news about rehab - it will be lots of hard work for our girl but she's going to prevail. Way to go Becca!:yay:
Glenda

llurgy

03-15-2009, 05:52 PM

Day 37 part two
Here is a message from Bic:

"Dear Family and Friends,

You have been so generous and thank you so much for making me feel so nice. I should be out of here soon, then I can see you.

My tummy is a bit weird and I also have a headache, but that’s okay because it will go away soon. Every day I feel the same. In the rehabilitation center, at least I get more sleep with almost no interruptions. Where I was before, I was really tired when I woke up because I was interrupted almost every hour by the nurses. They took my orange juice (orange juice means b-l-o-o-d! and needles are called “straws” now).

On the subject of food, luckily I will be able to eat real food and I am going to have a swallow test to see if I can drink things like water and coke. Hopefully I will pass, ‘cos I’m dying for some coke. I’m going to ask my um to have the coke frozen, but it will be flat. But that’s okay with me.

I don’t want to go into what I have to do during the day - there’s just too much.

Tonight when we go down stairs, I get to go in the gift shop. I get a treat - this one is going to be either the cat or a ...I can’t remember the other thing, but before I got a zebra, I called her Zoe, a bunny called Flopsey and a snake called Sarah.

If Tom and Sally are reading this, tell Elliana I will see her soon and I really like the card she sent me.

If Pastor Scott and Tony are reading this, I hope that I see you soon.

I will see you all soon. Thank you for all your cards and gifts!!!

See you all soon.

Love Bic Bic"

This afternoon, after a good rest, Bic and David played guess who and watched movies.

This evening, under protest, Bic got out of bed and went in her chair to look at a hidden object mural just outside the ward. She complained about feeling sick in her stomach, so we returned to her room, but we didn't make it to the bed before she vomited. After that, she felt a bit better and was relaxed - ready for sleep. We are not sure why she was ill - possibly part of recovering?

Day 38
Bic is a little depressed today and feeling sickly. We received a call about 4am asking that we comfort Bic. She had been sick (threw up) for half an hour and wasn't very happy. David went over, but by the time he arrived, she was trying to sleep. The vomiting didn't coincide with anything like meds been given and by all accounts, there was a lot of volume suggesting that she hadn't been digesting her food or her small intestine wasn't accepting the volume of food being introduced into her stomach. Her food was turned off at this point until she had been seen by a doctor.

Later, when we returned, she had already been for an x-ray to determine if the NG tube was positioned correctly in the stomach. She had also thrown up again, with still no feed going in.

The x-ray showed that the tube terminated a little too early at the bottom of the esophagus, so plans were made to push it about 3" further down into the stomach. The theory being worked on was that the food being introduced where it was is irritating the esophagus and causing her to vomit. If this doesn't work, they are looking at replacing the NG tube with an NJ tube, which terminates in the small intestine. They might have done this today, but being a Sunday, the radiologist do not work (they have to be called in).

The food was turned on at 3pm at a reduced rate. It wasn't long before Bic was complaining that her stomach was cramping again. She was given anti-nausea medicine and that seemed to ease the symptoms.

Bic has been quiet all day, not wanting to do anything including watch the TV. She is definitely not happy!

We are thinking that the tube adjustment or going to an NJ tube will not change anything. She has had the NG tube in for so long like this that it is unlikely this is the problem. We suspect that she has either contracted a bug or it is yet another part of her body that has become hypersensitive and is related to changes that are going on in her brain.

The doctor told us that the last blood test had a slightly elevated white blood cell count and that they were keeping a close eye on it. It coincides with her throwing up and also a change in antibiotics. He said that the pancreas can release a lot of white blood cells if it is squeezed, like by the action of throwing up. Another blood sample will be drawn tomorrow to see if there is something going on that we should be concerned with.

Something interesting we forgot to mention yesterday was that Bic says she cannot remember when she was unable to talk and that was only a couple of weeks ago! It is gratifying to realize that most of this awful ordeal will not be remembered by Becca.

Love
Mandy

eyor44

03-15-2009, 06:03 PM

Once again, two steps forward and one step back. Sounds like a bug. I had the flu a couple weeks ago and my symptoms were the same. or the fact that she hasn't had food for so long that her system is having a hard time dealing with it. Hopefully they will figure it out quickly. Poor love has enough to deal with without being sick also.
Sounds like you all were really busy yesterday. I love all the pictures.

MapleGirl

03-15-2009, 07:30 PM

Oh Bic!!
I am so happy to hear that you are in rehab. Keep up the good work sweetie! All your DIS friends are cheering for you!:cheer2: :cheer2: :cheer2: :cheer2: :cheer2:

I hope your tummy feels better soon and you will be enjoying many delicious Cokes.

Thanks for posting Mandy. Loving thoughts from Boston are sent your way.

Priskillet

03-15-2009, 08:29 PM

Just reading thru wanted to say hello and to send you well wishes are with you! :hug:

MAGICFOR2

03-16-2009, 01:13 AM

Miss Becca! I'm so glad you are in rehab, and enjoyed your letter very much! I'm continuing to pray for you to feel better and get stronger every day!:hug:

jenb1023

03-16-2009, 11:43 AM

Keep hanging in there! I am sorry her stomach is bothering her and I hope they can get that resolved soon. It was so nice of Becca to write a letter to everyone. :hug: to you guys!

twinmum

03-16-2009, 12:10 PM

Dear Becca: thank you so much for writing a letter to all of us here. I know there you have heard from many people you know very well...but you and your parents have also been hearing from lots of people from all over the country - and the world! Our family is from Toronto, Canada. All of us "met" on the DIS boards, when we were getting more information about WDW. Our son Mark was also granted a wish and he chose to go to WDW. We were there in November, a little while before you went. We had an amazing time, and it sounds like you did too.

Mark has cerebral palsy, and uses a walker or wheelchair to get around. He also has a wonderful personality, just like you. He does physiotherapy every day, so I can relate to how tough it can be to do the therapy on days when you just don't feel like it. you guys make your parents very, very proud!

I'm sorry your tummy is giving you trouble these days and hope they figure out a way to get you eating - and drinking (COKE!) your favorite things soon.

We think your parents are special people and that makes sense...they have a very special, special girl!

Thanks for letting us know how you're doing - it's great to hear from you directly!

Your friends,
The Bowen family from Toronto, Ontario, Canada

maroo

03-16-2009, 01:20 PM

Becca...

You are so sweet to write us all a note! :)

Gosh, I hope you are feeling better today than you have been. That sounds like no fun at all!! Hopefully it is just a little bug or something and nothing too serious.

William - Lauren's little brother - is in the hospital right now, too and he is not feeling good at all either! But he has not been there nearly as long as you!!

Hang in there!

I am praying for you and your family!

:hug: :hug: :hug: :hug: :hug: :hug: :hug:

iu97alum

03-16-2009, 04:21 PM

Becca!! So glad to hear you're up and around again!! We miss pictures of your smiling face so get better soon, k???

Hugs to your Mum and Dad too!

llurgy

03-17-2009, 09:54 AM

Yesterdays report, sorry its late.

First thing this morning, Bic was very bright - despite throwing up phlegm during the night. She hasn't had any feed for some time now. Her mood has been up and down all day. One minute, she doesn't want to know, the next she has a big smile on her face.

For now, until the reason that Becca is throwing up is established all the nurses and Doctors are gowning up before they come into her room. Because she is throwing up and a reason hasn't yet been found they are erring on the side of caution and treating her as if she has a virus and needs to be in isolation.

Doctors have been debating what the problem is with Bic's stomach and shortly after lunch, they decided to remove the NG tube and replace it with an NJ tube going directly to the small intestine. We questioned the merit of this given that she has been fine with an NG tube for nearly a month now and suggested that this change was merely a work around that didn't address the root cause of her stomach upset.

The senior rehabilitation doctor then examined Bic and noted that the pain was originating from her right side and questioned whether the problem could be her gall bladder. The doctor suggested that because of her long stay in hospital (in bed), she could have a sludge build up in her gall bladder that would explain the symptoms that she is experiencing. As a result, they didn't make the change to the NJ tube choosing to hang on until tests of her gall bladder had been done.

The plan is to do an ultrasound of Bic's gall bladder tomorrow. If, indeed sludge is found, they will give her some medication that treats this condition. Depending on how she picks up her feeds after that will determine if they put an NJ tube in.

Bic was quite busy today with therapy. It was all done at a reduced intensity because of her belly pains, but she didn't skip any sessions this morning. She did get out of class this afternoon, though because rehabilitation wanted her to have a heart echo study done (ultrasound of the heart). They found that her heart was fine and of no concern as far as pushing Bic during the course of the therapy.

Rehabilitation also want a lung function test to be done to make sure there are no issues to be concerned about because of her pulmonary function.

Tomorrow, the speech therapist has promised to try Bic on Pringles tomorrow - she is really looking forward to that. Also, the swallow test on liquids to consistency of water are planned for Wednesday afternoon. They may even try her with some chewing tests (cookies baked with barium).

Today she has been down for her abdomen ultrasound as yet we havent heard the results from that.
Becca still hasnt had any feeds since Saturday, she should have been able to get pureed scrambled egg for her breakfast but it came up unpurreed, when we got a pureed repeat order she enjoyed a few spoonfulls of the sausage and the egg.

iu97alum

03-17-2009, 10:08 AM

Oh yea! I'm so glad she's making progress. HOpe they find out the cause of her throwing up. That isn't any fun for anyone!

llurgy

03-18-2009, 08:59 AM

The day started early with a visit downstairs to the Ultrasound for an abdomen echo gram at 8am. The procedure wasn't quick but it wasn't as lengthy as the arms and legs.

We came back up from that hoping to have some pureed eggs for her breakfast only to find that even though we had ordered from the pureed menu the food had arrived "whole". A re-ordered breakfast came up at around 10am, so it was a late breakfast for Becca. She only tried a couple of mouthfuls but some is better than nothing.

The results from the Echo showed "some sludging" so she is now being given a medicine called Actigall. Sludging is a kind of pre-cursor to Gallstones and generally affects people that have been immobile for long stretches of time. The medicine will help speed up the gall bladders reaction time for clearing the stomach and so aid digestion. Hopefully this will help clear up the "pukey" feeling she is living with constantly.

Bic managed to do some therapy. She took a few steps and sat on a commode, but she complained of her stomach every time she got up.

Mandy wasn't well this afternoon and she had to retire to the Ronald McDonald house for the last part of the day.

We questioned the doctor about the fact that Bic had essentially not had any nutrition for the last three days only to find out that the doctor believed that she had put an order in for tube feeds to resume. The nurses responded by saying that no order had come through. The doctor expressed dismay at the new computer system and went away to investigate. Later we discovered that the doctor was attempting to get some low fat formula and the hospital appeared to be out of it! Pediolite was put forward as a backup - and this is still being figured out at 9pm!

They are going to start the feeds up slowly and see how Bic tolerates whatever they finally end up giving her. Hopefully replacing the very high fat content Jevity formula will make a difference to how she has been feeling. In any case, she definitely needs some food if she is going to bee able to cope with all the therapy that is planned.

In the meantime, Bic has had a few bites of quessidila and mandarin orange, which she enjoyed - Bic is now allowed soft chewable foods (it doesn't have to be pureed).

Becca also had some other tests performed.
She had to have an RSV test just to make sure, this entailed pushing tubing up her nose, squirting saline up and then collecting the saline mixed with whatever is up there. They didn't get enough mucus out so that test has to be performed again today.
She also is going through a series of pinprick blood collections on her fingertips. They want to test her CO2 levels in her extremities, if they are really high they may start making her sleep with a CPAP mask on to try and raise her O2 levels whilst asleep.

Mandy finished up being "not very well" in the evening and then when David got back to the Mac house her took over being sick too.

We are in a sorry state.

llurgy

03-18-2009, 11:06 AM

Mandy got up early this AM to go across to the hospital whilst David stayed sleeping for a while.

Becca's IV's for drawing orange juice have blown, so sometime today she is going to have to have another IV placed. The PICC can be used for meds but will no longer work for drawing orange juice.

There was a follow up CT scan of her head with contrast this morning at 11am. This was done with contrast this time.

At 11.50am she was put through yet another RSV test with the tube and saline up the nose. Again I don't think they collected enough mucus from up her nose but that is probably because she doesn't have any mucus up her nose at all at this time, she is clear as a bell as far as cold symptoms are concerned.

She will be going for her swallow test this afternoon at 1pm.

We have a group meeting at 2pm with all the rehab staff and the doctors, it will be a "goal" meeting with whatwe hope to get out of re-hab in the coming weeks.

Speech, PT/OT and recreational Therapy still work with her 2 times per day in between all of the tests and other things.

maroo

03-18-2009, 11:38 AM

bless your heart!!!

I am so sorry about the sludge...but glad they found it!! That is good news.

I am so sorry that you are sick, Many...and that David, you have 2 patients!

Gosh, I hope you feel better soon!!!

jenb1023

03-18-2009, 11:55 AM

Mandy - I am so sorry to hear about you being sick but am glad to hear about Becca getting to eat a little bit. I hope they get this stomach thing resolved soon and that the gall bladder medicine provides some relief. Hugs to you guys as always! Jen

llurgy

03-18-2009, 07:03 PM

Day 41 - Thins (March 18, 2009)

Mandy got up early this AM to go across to the hospital whilst David stayed sleeping for a while.

Becca's IV's for drawing orange juice have blown, so sometime today she is going to have to have another IV placed. The PICC can be used for meds but will no longer work for drawing orange juice. This afternoon the nurse came into Becca's room to ask her when would be the best time to replace the blown IV's. Becca requested that it be put off until tomorrow, this request was approved by the doctor and she had the Orange juice they needed to draw taken by a finger stick.

There was a follow up CT scan of her head this morning at 11am. This was done with contrast this time.

At 11.50am she was put through yet another RSV test with the tube and saline up the nose. Again I don't think they collected enough mucus from up her nose but that is probably because she doesn't have any mucus up her nose at all at this time, she is clear as a bell as far as cold symptoms are concerned.

Becca went for her swallow test this afternoon at 1pm. She was there with David for around 45 minutes. They came back up to the room with glum faces but that was just a tease, Rebecca had passed her test with flying colors and is now allowed to drink thins (real liquids without the thickener in them). Bring on the Coke, Sprite and Apple juice!

We had a group meeting at 2pm with all the rehab staff and the doctors, it was a "goal" meeting with what we hope to get out of re-hab in the coming weeks. Also addressed was her seemingly bad "near" vision and the bleeding AVM (malformed blood vessel) in her mouth. Hopefully both of these will be rectified in the coming weeks. Her vision is causing problems at the moment as she is not able to participate in a lot of the things that Occupational and recreational therapy wish to do with her.

After going nearly a full day with her feeds switched on and the new medicine for her Gall Bladder doing its job we thought Becca was on the mend. Unfortunately she spoilt it at around 4.30pm when she decided to throw up again. She had been complaining that her stomach felt bad throughout the day, especially when she was made to do her "sitting on the side of the bed" exercises. So again we are playing the waiting game to see how things go.

Speech, PT/OT and recreational Therapy still work with her 2 times per day in between all of the tests and other things.

jenb1023

03-18-2009, 08:34 PM

I was all excited to read about the good swallow test and then I got to the upset stomach/throwing up part. Hopefully, it is just a matter of the gall bladder medicine taking its time to work. Hang in there and give that sweet girl a hug for me!

eyor44

03-18-2009, 10:49 PM

well.....yay! for the swallow test. :cool1:
Boo for still being sick. Some coke is what she needs, some good, regular, ice cold coke. You know, when it is so cold that there are little bits of ice in it. She's having withdrawls from having coke cola withheld.
I can totally sympathize. I am so addict that if I couldn't have it, I would be sick too.:sick: Pathetic, I know. :guilty:

Really, I hope they figure it out soon and the meds start to do their magic.
Take care of yourself Mandy, and you to David.

llurgy

03-20-2009, 11:40 AM

Day 42 - Impeded (March 19, 2009)

Bic had a really good nights sleep, but that was ruined at 7.15 this morning when she threw up again. At 6am, her feeds were increased from 20 to 40 ml/h, so it's not clear if this is the problem. Afterward, she just wanted to sleep, but at least she didn't have stomach ache. They estimated that she had been fed about 200 ml overnight and that she had 'returned' 75 to 100 ml. What is important about this is it does indicate she is digesting some food.

Throughout the day her stomach has been feeling yucky, which has impeded her willingness to do anything involving sitting up. Despite this, she did do some sitting up exercises (under great protest) including laying on a bed that could be inclined all the way to a standing position. She didn't make it quite that far, but it allowed Bic to put weight on her legs for more than a few seconds.

Around 2.30pm isolation was finally lifted!!! Becca was getting totally fed up of everyone (except David and Mandy) having to gown, glove and mask up when they came in to see her. But she especially missed seeing Ainsley the dog as he wasn't allowed to come see her. There were still no results forthcoming from the RSV testing, even after 2 tests they still were not able to get any mucus from up her nose. I think after the 2nd failed test they just decided to give up and lift the isolation.

A GI doctor saw Bic and his recommendation was to eliminate the formula feed for a while. It would be replaced with pedialite to see if there was something in the feed that could be causing the issues.

The ward doctor also decided to do an x-ray of her belly and chest (she has an intermittent cough too).

Bic finished the day with a nice bath, which she really enjoyed.

Scrap the last sentence, Bic finally finished her day by going down for a chest and abdomen X-ray. We got back to her room at 9pm. She just has to have her nightly meds and she should be set until midnight.

llurgy

03-20-2009, 11:42 AM

Today I arrived around 7.15am to find that after holding her pedialite for the abdominal xray the previous evening Becca never actually got put on it because the xray showed that her bowel was indeed extended and inflamed and GI recommended nil by mouth until it was decided which course of action was going to be taken.
The re-hab doctor came around this morning to say there was basically 3 ways around this.
1) The put a NJ tube down into her gut
2) To go onto TPN (IV feeding)
3) Transfer her to the GI unit until whatever it is gets sorted.

As yet we don't really know what is happening, we do know that for the moment her gut has basically closed down and is not allowing anything from her stomach to be digested into the Duodenum.

On a good note.......Becca is feeling quite good today, she has only been feeling a bit "Icky" periodically and has actually done quite a lot of "GOOD" therapy today.
She got herself dressed today with minimal help and brushed her own teeth!!:woohoo: :woohoo:

Mandy

iu97alum

03-20-2009, 12:23 PM

If it's not one thing it's another. :( Glad to hear she's feeling better and getting up and around and OUT of the room! I remember when Emy was in isolation and it made ALL of us stir crazy. Sending our prayers and thoughts to getting this resolved ASAP!

maroo

03-20-2009, 12:59 PM

llurgy

03-20-2009, 05:10 PM

Right, today part two......

Around 10am our doctor came around and said that the plan was to move her existing NG tube down into her Duodenum and it become an NJ tube.
Apparently over the past day (shown on last nights xray) the stomach had actually propelled it down past the sphincter in-between the stomach and duodenum all by itself and hopefully the docs would be able to just push it on its continued journey.
There would have to be an xray afterward to make sure that it was placed correctly but this way was better than putting her through having the NG ripped out and a new NJ placed under XRay and probably sedation (They don't like to sedate Becca because of her low Oxygen's).
GI did their rounds and repeated what our re-hab doctor had just said.

So around 11.30am....the tube was moved down and we were told that we were just going to be waiting for XRay to double check placement and then feeds could start.

At 3.30pm this afternoon I let loose! It seems that GI had failed to mention to Me or the staff on Re-Hab that the moving the tube procedure had to be repeated another two times at least with at least 6 hour intervals in-between!
We are waiting for xray and xray wasn't happening until tomorrow after the 3rd tube migration.
I didn't go off at the re-hab staff, I went off at the GI doctors but the only trouble was that I had to do this through the re-hab docs, which I felt bad about but I felt I had to say something.
Anyways, since the second tube movage she has been able to take in a liquid diet by mouth so she has just had some broth and some Jello. Not a lot, but enough to satisfy Becca:goodvibes
Apparently, the reason for the gradual tube moves is to allow the duodenum itself to do a lot of the travel work by its own contractions. This I can understand and if this had been relayed in the first place I wouldnt have been annoyed at all.
I hate non- communicative doctors!! Especially those that are all smiles and information to your face and then go and do something totally different 5 minutes later.

Becca has been well all day and has done great in all of her therapies. Isn't it surprising what happens when you don't feel nauseous all of the time?:woohoo:

jenb1023

03-20-2009, 09:28 PM

I am glad Becca had a pretty good day! You go Mama Bear - you are your child's best advocate and don't ever feel bad about that! Sending pixiedust: and prayers that these GI issues get resolved permanently.

TwistofLemon

03-21-2009, 01:48 AM

rodeo65

03-21-2009, 09:20 AM

I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.

Very true. I've only posted once but have lurked all along. I check Becca's thread daily, usually twice - once when I get on the board and once before leaving. As always...thinking good wishes and prayers for Becca! :cutie:

maroo

03-21-2009, 01:45 PM

I agree...the "views" on the thread are still increasing...but not as many people posting.

I know that you guys must be exhausted by now.

We are still praying!! Lots and lots of us!

eyor44

03-21-2009, 01:54 PM

Yes, we are all still here. I also check this thread a couple of times a day and view the web site daily to see if there are any new pics.

:cheer2: You go Becca!:cheer2: We are all here and praying for you.

Give those doctors heck Mandy. They need to be reminded occasionally that they need to communicate.

llurgy

03-21-2009, 02:05 PM

Hi everybody,

Thanks for the reassurances that we are still being prayed for......We really didn't need that reassurance though as by now we do realize what a lot of warm and generous people there are avidly reading about our Becca's journey - we don't need proof of it :lmao: ;)

Bic continues to do fine today, again in very good spirits even though she has had to go through another 2 times of "threading the tube" down. She has had an X-Ray and thankfully the tube is in a good place so they can finally start her feeds again. They will start her on Pedialite, 20ml's per hour continuously and upping the volume gradually. Depending on how she tolerates her feeds the plan is to eventually go onto half Pedialite and half formula and then switch to total formula. We have no idea of the time-frame :)

In the meantime Bic is enjoying her little sips of sprite/coke/water or whatever drink she fancies, she is also enjoying her little nibbles of Jello.

They are going to have trouble with Bic when they start trying to count what she eats calories-wise for real eating. She eats so very little and gets full so very quickly that I fear they make keep her here just because she wont eat enough! On a good day she doesnt even get halfway through a kids meal at a restaurant and from past experience when she has been sick before I think a mouse eats more than she does.

Becca again got herself dressed today with minimal help. As she is laid in bed and still diapered she does need help maneuvering her waistband over the diaper whilst lifting her bottom off the bed at the same time. She sat up to put her t-shirt on and put her socks on. She then did a really good job of brushing her teeth. She was proud to show her daddy all these things as he hadn't been there when she did it yesterday morning.

In Physical therapy today she took another whirl on the tilt table. They strapped her on it and started to tilt it upright. They kept stopping it and she kept saying "more", she made them carry on until she was totally upright. She was so proud of herself!! They were quite amazed that she had wanted to go so upright so very early on in the tilt table therapy (i think it usually takes a good weeks worth before total upright-ness), but Bic liked it :) She finds the tilt table fun and after ten minutes of tossing a ball back and forth between David and I they told her it was time to go back down.
Now she was not happy, she wanted to carry on :lmao: Again the therapists were really freaked as usually kids cant wait to get off, they never have anyone asking for more time on it:rotfl:

No more "bad" things happening today, we are going for a trip to the gift shop today so she is looking forward to that.

Love
Mandy

llurgy

03-21-2009, 02:12 PM

Becca, Mandy and David,

I really can not even imagine how you have any shred of patience left. Where do you find your strength?

Great news that Becca has felt better today! I hope you get better and better every single day!

I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful! :confused: Not sure how something can be both at the same time, but that's the way my mind works! :laughing:

Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.

I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic. :hug:

God Bless, Best Wishes, Good Luck, and Stay Strong!

The pillowcases would probably best being sent to the Maccie-D house again, they seem a tad more organized than the hospital. There is no rush though, we are in here for quite some time yet:lmao:
All her pillowcases are again in the wash because of the throw-up week and she was quite dismayed to find that tonight she had to sleep on a hospital pillowcase???? Spoilt?? :rotfl:

Of course cheerful and restful go together......It equals "Happy Dreaming Sleep":goodvibes

eyor44

03-21-2009, 02:15 PM

Everything sounds great. Getting dressed, brushing teeth, going shopping. Yep, that girl is on her way.

I'm not surprised she liked the tilt table, if it is what I am thinking. Aly liked the table they put on her for a CT scan. She asked to go back and forth on it a couple more times. Said it was almost as good as a ride at Disney. :lmao:

(Psst: it's the coke. Perk you right up it will.:thumbsup2 )

twinmum

03-21-2009, 03:20 PM

Mandy: Wonderful to hear of Becca's continued progress! I'm glad the NJ tube is now in place and her tummy is settling down. I am sure she's enjoying the sips and bits of yummy stuff she is now able to have.

We're praying that she continues to improve - and I'll throw in a prayer that those docs learn a bit more about family centred care (way to go giving 'em a pice of your mind!)

Alison

llurgy

03-23-2009, 07:57 AM

Day 45 - Aspiration (March 22, 2009)

During the doctor's rounds this morning, it was announced that the oximeter could finally go. They accepted that the readings it was giving were unreliable and that nobody was taking any notice of them anyway, so it could go. They rationalized it for themselves by saying that when we go home, we are unlikely to be watching her oxygens closely and so this was a step in that direction.

The doctors had also noticed an abnormality on one of Bic's recent x-rays and they wanted to investigate further. On the last abdominal x-ray, they noticed that there was something at the bottom of her lungs. We went for an x-ray early afternoon and were visited by the pulmonary doctors a little later. They said that the shadow was consistent with an aspiration and from what we could work out with timings, it had happened when she threw up on March 19 in the morning. David recalls coming in and seeing the PCA trying to catch everything using a large wash bowl with Bic on her side (not sat up in bed). It didn't allow Bic to have her head low enough to completely empty her mouth and we think she aspirated on vomit then. Unfortunately, the doctors want to be super cautious and are considering further restricting what Bic can eat. They have already nearly doubled the dose of antibiotics to address this situation (Flagil) and want to do percussion on Bic's chest to help clear it.

Bic hasn't been as active as she was on Friday and Yesterday. We did get her out of bed into her chair and onto the roof garden again. It was lovely and warm today like it was yesterday and probably got close to one hour outside (interrupted by a request to return to the ward to see the pulmonary doctors).

We think there could be something in the aspiration 'theory' because she does seem to have been more short of breath when she does things and just hasn't been on top of the world. In the past when she has vomited, she has had the occasional cough for up to an hour, but this time she has been coughing on and off since Thursday morning.

Bic's food feed rate has been increased all the way to 60 ml/h on pediolite. This afternoon, they turned it down to 20 ml/h and switched to a mixture of pediolite and formula (3:1). So far with the NJ tube, Bic hasn't had any further signs of nausea and her stomach appears to be settled.

One problem that has emerged is that with the constant input of liquid through tubes (IV and NJ tube) into her body is that she continues to pee through the night. Bic complained of frequent disturbances caused by over-flowing diapers. She said the staff had to disturb her several times to change the sheets, which isn't good when she expected to wake up fully refreshed.

There are many aspects to Bic's recovery that are now becoming catch 22 issues!

maroo

03-23-2009, 10:49 AM

Bless your heart, Becca!

I hope you start to feel better again, soon!

We are praying!!!!!

jenb1023

03-23-2009, 11:37 AM

I am so sorry to hear about the possible aspiration and the overflowing diapers. I was happy to read that Becca has not been nauseous and got some outside time.

Good thoughts, prayers and pixie dust being sent your way as always!
Jen

p00h4me

03-23-2009, 12:22 PM

It's so good to hear of Becca's improvements and that the doctors helped get rid of the nausea feeling and the throwing up. I'm still reading and keeping up with her daily progress. Our love and prayers to you all!

twinmum

03-23-2009, 04:54 PM

Well, I'm glad Becca's feeling less nauseous, but I am sorry to hear about the aspiration. Sounds like that explains her decreased energy.

Again, 2 steps forward, 1 step back. You guys have the patience of Job!

Praying for all of you,
Alison

llurgy

03-23-2009, 05:34 PM

A Day in the Life of Becca

Today Rebecca started the day with a flying leap!

Mandy arrived around 7.40am and Becca was already awake after a decent nights sleep with only very few disturbances.

By 9am Rebecca was dressed, washed, hair brushed, teeth brushed, Lovonox (blood thinner for the clot)shot in belly done and in her chair ready to face the day.

At 9am the first port of call was Group therapy which is held in the school room just down the hall. In group therapy there were 3 children including Becca. First the kids had to make sure they knew the day, date, month, season etc and then they had to state what their goal was that they wished to achieve this week. Becca's goal was for her hands and arms to be strong enough to pick up and to use her Eeee PC.

At 9.30am was PT in the Gym. Today she had to get out of her chair and with the aid of a walker walk around 8 steps to another destination. She managed quite well although she did get a low oxygen related headache afterwards.

At 10am we then went back to the classroom for her school lesson. It is the first school lesson she has taken and so was more of a "getting to know" the teacher kind of thing. "Jane the Pain" (teachers nickname) got to know Rebecca and read some of the things out that Rehab graduates had written to stop new kids being scared of rehab when they first arrive.

At 10.30am it was time for speech in the speech therapist's room with Jenny and Ainsley the dog. Today's lesson was spent teaching Becca Ainsley's commands for the tricks he does and general memory retention.

At 11am it was then time for Occupational therapy. We went back to the gym for this and enjoyed a game of Blokus to help with Becca's hand coordination and hand and arm strength and reach.

At 11.30am it was time for Recreational therapy. There has been an ongoing game of Spongebob Monopoly going off for the past 4 or 5 days and so the game was set up yet again, this time in the gym versus in her room.

At 12 noon we finally went back to her room for a well earned rest. She had managed to stay out of her bed and awake for a full 3 hours!!

Just after getting into bed after a full morning she started to complain that her belly felt horrible again. This is the first time she has felt bad since Thursday after the early morning throwing up episode. This is disappointing as we felt the nausea was behind us after the placement of the tube from her belly into the intestine. She also complain of belly cramps too. As of 4pm she is still suffering from intermittent nausea feelings and bad belly cramps. Today she hasn't eaten anything at all by mouth, she says she doesn't want anything. Now this could be because she is feeling "iffy" but it could also be that the only things she is allowed to eat is Jello or broth and she doesn't like broth.

At 12.30pm she had to have a blood draw which takes quite a long time because the vampires take lots of blood. The blood draws only happen 3 times a week now which is a huge improvement over the 6 times a day on the other ward.

Around 1.30pm the respiratory person came around to do some pummeling on her chest to make sure that the lower part of her lungs which may have the pneumonia in them don't get any worse. They seem to have the antibiotics covered for that after upping her existing Flagil dose yesterday. Because of the "pneumonia" they also want to repeat the RSV test that kept failing earlier last week. This time they are just going to try and put a swab up her nose to see if they can get anything on that instead of the saline nasal rinses that were not being fruitful.

Again because of the "pneumonia" and because she is showing slight signs of breathlessness they are resuming Pulse oximitary readings. Luckily they are only doing spot checks every so often as it is still nigh on impossible to get a good "steady" reading from any of Becca's digits. The readings they do get range from the low 30% to the high 50%, though we have had two readings today of 72%, one on her thumb and one on her earlobe.

After another round of half hour therapy lessons (Speech where she had to remember what she had learnt that morning, PT - strenuous leg stretching exercises, OT - peg board hand manipulation and recreational therapy - Monopoly) this afternoon she had her massage therapy at 4pm and fell asleep in the middle of it.

At 5.15pm the respiratory therapist came around again to do a second bout of lung pummeling. Becca must quite like it as she just relaxed and lay there without complaining, in fact she hadn't come around from falling asleep in massage so she just carried on dozing.

Our Bic is a very busy little girl!!

Love
Mandy

eyor44

03-23-2009, 08:33 PM

My goodness what busy day. Prayers and pixie dust that the lungs getter better soon.

gcast1

03-24-2009, 10:18 AM

Our girl is amazing and such a trooper! Continued prayers and big hugs to all of you.:love:

Glenda

maroo

03-24-2009, 10:27 AM

Wow!!

What a trooper!!!!

Way to go, Becca!! :cheer2: :cheer2: :cheer2:

Still praying for you guys!

llurgy

03-24-2009, 09:40 PM

During the night, Bic was running high temperatures. She spiked a temp of 102.6 at 2am, then 101.2 then down to 99.8 at around 8am.

The doctor came in around 7.45am to listen to chest and didn't like that she couldn't hear as much air movement as yesterday. Bic was immediately sent for a static x-ray which was done at 8am. Bic's pneumonia is worse.

The neuro surgeon popped in to say that the infection markers in her blood were way down and that was really good as it meant the abscess in her brain should be showing signs of improvement. He was surprised that she had a pneumonia because he said as far as her blood work goes there is no infection so the pneumonia must be just be lacking an infection in it.

GI came round and when questioned about the throwing up yesterday, blamed it on the pneumonia. He said that as far as they were concerned the pedialite/formula shouldn't be making her sick as it wasn't going into her belly and that it should be carried on and built up in volume/nutrition as was their original goal.

There was discussion between the rehabilitation doctor and Yale regarding the treatment of Bic's pneumonia. It was decided to do the pummel vest and the assisted coughing
machine as the pneumonia needs to be addressed aggressively. We still have to be careful that she doesn't get a prolonged or harsh cough as that will be detrimental to her lungs.

Bic feels garbage today. She has done only minimal therapy on the side of the bed and only 10 minutes in her chair. She feels tired, listless, nauseous and has headache and dizziness. They are putting it down to her having pneumonia but we are not so sure seeing as she doesn't have the infection normally associated with this condition. Maybe the pneumonia is affecting her oxygen's and making them lower thus making her feel worse.....we don't know.

Because of the continued throwing up even though nothing at all is going in her belly they have finally given up on the tube feeding. As from this evening she is going TPN through her PICC line. We didn't want this and it is a sort of disappointment that her GI issues have gotten so bad. The doctor says that to fight the pneumonia she needs calories and she hasn't had any for so long, so TPN feeding it is.

When mentioned to the rehabilitation doctor that GI were saying that feeds shouldn't be giving her nausea and that tube feeding should carry on, she said that may be so, but she isn't getting any nutrition at the moment from the tube feeds and she needs it NOW. The only sure way to do that at this stage is to TPN it in. TPN stands for Total Parenteral Nutrition (feeding via IV).

The irony of the TPN is that we were told a few days ago that this method of feeding is only used as a last resort on patients because there was a risk of infection from it. As things are going, it would be our luck for Bic to get that as well - and all because GI have not properly addressed a problem that started about three weeks ago.

Becca had her respiratory treatment around 5pm which was cut a little bit short because she again finished up throwing up.

Because of spikes in temps over the last 24 hours and some neck pain the doctor ordered a CT scan with contrast without any delay, so off we went down to radiology yet again......Bic must truely be glowing by now. The results came back almost immediately so the doctor could go home with a clear conscience as they were all A-OK. The concern was that there was something going on in Bic's head (brain abscess).

We decided tonight that we were going to push things as far as the GI issues were concerned. The rehabilitation doctor has been doing her best but she seems to be having a constant battle with the GI unit in trying to get them to be pro-active in Bic'c care. So we were put in touch with the hospital nursing supervisor to try and act as an intermediary for us.

She contacted the GI department and told them that we were concerned about the care she was receiving and requested a consult with a senior member of staff to discuss what they were doing (going to do) to treat the ongoing stomach and digestive system issues. This is going to take place tomorrow. If there is a no show from GI or we are not satisfied with their response, it will be raised as a formal complaint against the department.

Love Mandy

maroo

03-24-2009, 10:03 PM

Oh, Mandy..

I am so sorry!!! Please tell Becca we are praying for her and that I am sorry that she is feeling so bad! :( :( :(

I am so thankful that you guys are staying on those GI docs!!!!!! Hopefully a senior member of the team will help fix what is going on.

Hang in there!!!!

dvc at last !

03-24-2009, 10:22 PM

I continue to think of you and pray.
Take care.

eyor44

03-24-2009, 11:35 PM

Oh Mandy. Hopefully you will get some satisfaction tomorrow with the GI doctors.

Aly had pneumonia two years ago. She just suddenly spiked a fever that we could not get rid of. First visit to the doctor they thought she had something else and sent us home with a prescrip. Then she started throwing up and it was a weekend. I kept in contact with the doctor over the weekend and took her back on Monday. They did a series of test, one being chest xrays. We were sent home and I was on my way back to work when they called to say it was pneumonia and to bring her straight back. Before I reached the office they called again (cell phones are wonderful some times) and asked me to go by a pharmacy for an injection med that they would administer in the office. That kicked it out. I really wish I could remember what they gave her. Of course hers was caught in the beginning and she didn't have the issues Becca does. It was very worrisome for a few days not knowing what was going on.
Hopefully they will figure everything out for Becca soon. One small note, yay on the brain abscess getting better.

TwistofLemon

03-25-2009, 02:20 AM

Hopefully you'll have some positive action with the GI folks tomorrow. Of course Becca needs nutrition now. Sheesh! She needed it weeks ago. It takes a lot of energy(calories) to HEAL.
As always, God bless you guys!

twinmum

03-25-2009, 08:45 AM

Oh Mandy...I'll just go directly to praying for strength...for Becca to have strength to fight this pneumonia and heal, for you and David to have the strength to continue your amazing advocacy for Becca, and for those doctors - yes, the GI ones too! - to have the strength and wisdom to listen, learn and work together.

I hope today is a better day.

Alison

jenb1023

03-25-2009, 06:18 PM

I am so sorry to read the latest update! I was really hoping Becca was on the mend. Hopefully, they can get the GI issues and pneumonia handled very soon. You guys are doing a great job staying on top of Becca's care - I am sure it is a lot to keep straight and handle.

Sending good thoughts, prayers and pixie dust!

miprender

03-25-2009, 07:53 PM

:hug: Sending some more prayers.:angel: So sorry to hear that Becca is still feeling ill. If it is not one thing it is another for her.

llurgy

03-26-2009, 02:23 PM

Yesterdays update, sorry, I forgot to post it last night.:headache::upsidedow:upsidedow

This morning, Bic was in fairly good spirit, but it deteriorated as time went on. She did some therapy, but medicine was winning the battle of taking up her time. She had respiratory therapy (a vest that beats on her chest) and that made her feel unwell. She eventually threw up about 30 minutes after the vest treatment and it was only yellow bile and a bit of spit. Her belly area was cramping all the time up until this point, then it settled down a bit for the afternoon.

Bic did sit on the edge of the bed to play Sponge Bob Monopoly, but it was very uncomfortable for her and she frequently had to rest by laying down on David.

Bic had an x-ray of her belly and that appeared to show illeus (general slowdown of her digestive system).

When David and Mandy went for lunch, they ran into the GI Fellow who wanted to discuss our issues raised yesterday in the hallway by the cafeteria. He was told that it wasn't a particularly good venue and that a meeting on the ward was more appropriate. He said that he was going to be busy all afternoon and that it wouldn't happen until around 6pm.

Early evening, Bic had another respiratory therapy and again she felt like throwing up afterward. She had some anti-nausea medicine and that did appear to make the feeling go away.

Soon after 6pm, the GI Fellow came up to the ward to discuss Bic and the treatment she has been receiving. The discussion became confrontational and he went away to talk to the Attending. The Attending (Bic calls him the poo doctor) came in about half an hour later. It coincided with the Rehabilitation doctor also being present, so a good discussion ensued.

The GI doctor said that nausea and vomiting can be caused by a multitude of things. He said that after the body undergoes any major trauma, the body can respond in this way and also the intestines can slow down or stop. He believes that something has irritated the stomach - possibly all the medicines and salt water that have passed through the stomach earlier on in the treatment. He also said that ulcers or polyps are other possibilities, though less likely. Regarding her intestines, he thinks that they are still working okay.

A tentative plan of action is to book Bic into surgery and have a scope put down her throat into he stomach to see what is going on. He also thinks that it would be a good idea to have a stomach feeding/aspirating tube put in at the same time, whilst she is under general anesthetic. This would be a tube between the stomach and her belly, requiring just a small incision in her belly area. The only issue is that the tube would have to stay in for a minimum of 3 months because after a shorter period, it can't be removed without hurting her. The tube would be used to vent the stomach and also introduce feeds.

The nasal feeding tube would then be removed.

The GI doctor talked about introducing very small rates of feed directly into the small intestine (~1 ml/h) just to keep it working. They would start with pediolite before switching to formula feed.

He felt that is was of utmost importance to get nutrition back into Bic's body with some catch up also necessary.

The GI and Rehabilitation doctor went away to review her notes and begin formulating plans. They talked about doing the scope either Friday or Monday.

iu97alum

03-26-2009, 02:48 PM

Goodness! I'm so sorry to hear this! Sending prayers...

twinmum

03-26-2009, 07:27 PM

Ooh, how did you keep your patience?!? I'd have remarked (frostily) to the fellow that it was interesting that there were so many acute GI cases in hospital, keeping him so "busy". Mark's GI knows that I pretty much avoid the fellows if I possibly can - I just figure we've given a great deal of time to medical teaching and there just comes a limit. OK, I actually told him outright...no more fellows/residents/interns/medical students. No more requests to get a history.

Is the reason for keeping the g-tube in at least 3 months just so the site can heal? Mark has a g-tube and at the time it was placed, it was,quite literally, a lifesaver. His recovery from the placement was very straightforward, though. It was something else to get used to, but we did, and having this as an option for nutrition was very, very important at the time.

God must have placed a steadying hand on your shoulder many times today. I know relationships with the medical team are very important, but...!#@!#!@#!@!.

As always, praying for strength and peace for you all. You are all remarkable!

Alison

llurgy

03-27-2009, 09:45 PM

Day 49 - Ups & Downs (March 26, 2009)

Bic began the day feeling on top of the world. She excelled at everything she did including getting dressed, the group meeting, driving her electric wheelchair through an obstacle course etc. She was feeling really good about herself and her body (stomach) was co-operating. By 11am she was beginning to feel a little nauseous, but it was tolerable. After mid-day and by 12.45, she was feeling like trowing up. She was given anti-nausea medicine and that appeared to stop it from going any further. The afternoon was spent largely resting up. She did attempt some activities, but they were very much reduced.

At about 5.45pm, she began to feel very sick again and she did end up throwing up. After, she began to feel better fairly quickly and the rest of the evening she was in good spirit, but didn't really do anything physical.

The belly scope (and tube fitting if needed) has been booked for Monday.

In trying to aleiviate some of Bics stomach problems they have started to try and cut back on some of her oral meds. They are stopping the sodium medicine, sleeping medicine and stopping the nurontin. They are stopping sodium because it's replacement is included in TPN. The sleeping meds are to just given when needed and the Nurontin was going to be weaned but she is on such a small dose that they feel they can just discontinue it fullstop.

They doctors have also tried to consilidate all of her blood lab requirements and unless anything untoward comes up she will only have to have bloods drawn on Mondays.

Because she has had some stomach cramping and some feeling of nausea today they have decided to start the NJ feeding of Pedialite at 1cc per hour tomorrow instead of today as was planned.

They wish to give her gut some more rest time.

The Ophthalmologist came again today to dilate her eyes. She considers that her eyes have not changed since last time around two weeks ago. The blood vessels are still congested and tortuous but that may just be "Bic". They are going to give it another couple of weeks when hopefully she will be fit enough to go to clinic and have a full eye workup done.

It has been noted by one of the nurses that both times Becca had her penicillin today she started feeling nauseous almost straight away. To complicate this theory, her gall bladder medicine is given at the same time and both meds are given every six hours (12MN, 6am, 12N, 6pm), so we can't explain why she doesn't feel ill at midnight and with the early morning meds.

Another last minute thing has just come to our attention - GI want to do a swallow study looking at what happens to food when it passes into the stomach. We were told at 8pm they want to do it tomorrow morning, but they are unable to confirm it will happen or what time it will happen (go figure)!

maroo

03-27-2009, 09:49 PM

Thank you for the update! :)

still praying here!! :)

llurgy

03-27-2009, 09:58 PM

Day 50 - Happy to Throw Up (March 27, 2009)

Neither David nor I were with Bic during the day. We both went back home, leaving poor Bic on her own. The reports from the nursing staff when we returned in the evening were not particularly good. Bic has had a rough day feeling sick.

But let's get back to the beginning of the day:

Bic had a bad night suffering from diarrhea and sickness and was running a temperature as high as 102.2. The doctors decided that it wasn't a good idea to perform the swallow test that had been planned for this morning, so David went to work and I did the long overdue taxes at home.

When we first got back to the ward this evening, Bic was in fairly good spirit, though still obviously recovering from feeling ill all day. We were all watching a movie when Bic suddenly felt unwell again. It coincided with her 6 hourly penicillin being infused - it had been running for about 5 minutes, just like we have observed over the last couple of days. The complication is that another antibiotic called Flagyl is run immediately before the penicillin for an hour and that has a 'reputation' for causing stomach upsets.

Anyway, the penicillin was immediately stopped and the doctors called to report what had just happened. They in turn contacted the attending on infectious diseases for their recommendations. They confirmed that the penicillin should be stopped. They also terminated another medicine (Moxifloxacin) that was given for the first time today.

The penicillin was replaced with Vancomyocin (which she has received previously) and the Moxifloxacin was replaced with Cefotaxime.

This news is very promising and we are extremely hopeful that the cause of Bic's vomiting has finally been found. If it's not the penicillin, it is probably the Flagyl. Either way, the offending medicine can be eliminated and hopefully Bic can get back on with what she is here for - rehabilitation.

It also means that we maybe able to forgo the scope on Monday and not have to make that decision about having a belly feeding tube surgically placed.

The throwing up and possibly the residual medicine in her system continued to make Bic feel bad all the way through to going to sleep for the night; so it's not just a question of getting the meds, throwing up, then getting back to business. It seems to knock her out for several hours afterward and she is sometimes able to recover just in time for the next dose!

We are finally optimistic that Bic might have a good weekend!

jenb1023

03-27-2009, 10:27 PM

I am so sorry to hear how poorly Becca has been feeling but I am thrilled to hear you think you may have gotten to the bottom of the stomach issues! I hope to be reading good reports all weekend!

joy13

03-27-2009, 11:00 PM

Prayers that you have found your answers and that she has a good weekend - you all so deserve it!

llurgy

03-28-2009, 08:00 PM

Day 51 - Electric Chair (March 28, 2009)

Bic was feeling a lot better this morning after being quite bad when we left her last night. She felt weak, but was in good spirit. She got herself ready for the day by getting dressed and brushed her teeth. She had her respiratory therapy and was told that her chest sounded very clear with no signs of crackles. We later asked the doctor when she could stop having the 'vest' and we were told that they wanted her to keep at it for a little while longer to make double sure that there isn't any problem that could surface again later.

The doctor was very pleased with the turn around since the withdraw of her penicillin. She was quietly optimistic that we had indeed found the culprit for her stomach upsets, but didn't want to get too excited until she had remained settled for several days.

The endoscopy planned for Monday may not happen now depending on how Bic feels between now and then. For us, that is a good thing because we are not keen on having to make the decision about having a belly tube installed.

We also spoke to the neuro surgeon this morning and he admitted that he had been pressed by the infectious disease doctors to do another surgery on her lesion (abscess) because of her continued temperature spikes. With the events of the last 24 hours, this had been put on low priority and quite honestly, the neuro surgeon didn't want to rush into it. He admitted the initial sugery was done under less than ideal conditions which had lead to the bleed and puncturing of the ventricles. He said if they were to do it again, they would do a good MRI scan and direct the aspiration needle stereoscopically (like GPS guidance). Unfortunately, such a surgery would still put Bic back several weeks and she might loose her speech again. At this point, though it is not an imminent possibility - but that could change if her temperatures continue to spike.

Bic was out of bed in her electric wheelchair by 9am. We made a bee line down to the gift shop, Bic's favorite place in the hospital (surprise) and got herself a small cuddly chicken that she is calling Jake! Bic says "Sorry Jake, no offense, even though it is pink, it is still called Jake - but I am not calling you girly."

She stayed in her wheelchair all morning even through her therapy sessions. It wasn't until lunchtime that she finally got back into bed.

Through the morning, she experienced an active belly that she described as "gurgly and hungry". She didn't feel sick though, which is the main thing.

Overall, Bic has been weak from days of inactivity. Every movement has been a big strain on her body and especially getting in and out of bed has been very difficult for her. She did manage to go to the bathroom today - perhaps only the second or third time during her stay. It is still a performance getting her there especially with the pole stacked with infusion pumps and about half a dozen tubes to fight with!

Late this afternoon, the nurses took away the pole of infusion pumps to try to better organize them. That was our chance to escape, pole free. We all made a dash for the lobby and, of course, the gift shop. Our freedom lasted just over half an hour before there was a call put out over the hospital public address system for us to return to the ward!

That was more or less it for activities except for a much needed bath that she took this evening. Her belly continued to gurgle, not feeling right. It was as though her stomach was still trying to recover from weeks of torture and we hope that is what it is.

She is being fed again via her NG tube - all of 1 ml/h of pediolite! They plan to change this to 1 ml/h of formula tomorrow.

TwistofLemon

03-28-2009, 08:54 PM

Fantastic to see the new pics! I'm so glad you all had a good day, you certainly deserve it.
Wishes and prayers and pixiedust: that you've started an upward trend!

eyor44

03-29-2009, 11:26 PM

wow! missed a couple of days and look at all you have been through. I do hope they have figured out the reason for being sick. How wonderful if it were just the meds. Now the fevers. Maybe the fevers are because she feels so poorly? Prayers all around every day.:grouphug:

jenb1023

03-30-2009, 08:13 AM

Hi Mandy!

Hope you guys had a good weekend with no setbacks!

:hug: Jen

gcast1

03-30-2009, 09:06 AM

Still praying for our precious girl to get those tummy issues settled, and for Mandy and David to have the masses of strength they need every day! I really appreciate the daily updates.:love:

Glenda

p00h4me

03-30-2009, 09:22 AM

Just dropping by to say Hi! I'm glad the penicillin was found to be part of the source of Becca's tummy troubles. I love her new little chick, Jake, and Dollie the bunny pictures. It must have felt so good for Becca to just get outside for some fresh air and sunshine! You are still in our prayers!

maroo

03-30-2009, 12:15 PM

Still praying for you guys!! :)

Hope all is well! :)

llurgy

03-30-2009, 05:05 PM

Day 52 - Ice Maiden (March 29, 2009)

This morning, we found Bic in very good spirit. She has had a good nights sleep and was ready for a brand new day.

There is still a lot of medical things to contend with first thing in the morning like her 20 minute respiratory vest treatment, her Lovonox injection in her belly and organization of about half a dozen infusion meds and food. It makes the whole process of getting started very slow.

Bic had one of each color from her Trix cereal like last night and a lot of crushed ice (she had a full cup of ice)!

The doctor came in this morning and expressed her pleasure at how well Bic was doing. She confirmed that the endoscopy could probably be dispensed with tomorrow, but they would have to talk with GI first thing to get their buy in. Also we talked about the proposition of another brain surgery. She said that this was also looking unlikely since Bic appears to be in the clear since withdrawing the penicillin. The fevers are now been put down to the penicillin (drug fever). During the night, Bic complained that she woke with a hot flush and the nurses reported a high temperature of 100.2, which is relatively low for Bic.

She managed to go to the toilet again, which is a good accomplishment. She is being taken off the medicine pole for bathroom visits, which helps a lot with maneuverability around the room.

This afternoon, Bic had another trip down stairs to the lobby and gift shop. This time it was a large bunny she found. She was named Dollie!

Bic kept complaining of belly discomfort - not stomach and not nausea, but cramps lower down. This continued throughout the afternoon. She did get back in her chair once more to walk with visitors, but she had to cut her venture short because she felt too bad. We returned to her room mid afternoon and Bic spent the rest of the day in bed watching TV. Besides a few ice chips, Bic didn't really eat much more either.

Day 53 - March 30th

Again I arrived this AM to find Bic in great form. In fact she was awake and sat up in bed watching early episodes of Drake and Josh on her computer and all of this at the early hour of just gone 7am :)

We went through the morning ritual of eating breakfast - one small bite of scrambled egg and 4 segments of Mandarin oranges, getting dressed - of which she does about 70% herself now and brushing teeth which she does completely herself.

About 8.30am she has her vest treatment for the pneumonia, she still really hates this and it is 20 minutes long so it cuts into her 'free' time greatly.

The GI doc came in around 8.45am to see what was happening in preparation for her upper GI scope down in surgery today. As it was being related to him what had happened over the weekend and that because the nausea had gone away we didn't feel that the scope was necessary at this time he received a page from the GI attending stating that Becca's procedure had been canceled. :)

All her therapies then lasted through until 12 noon. She did rather well in them all, she did get really tired but she persevered until lunchtime.

For lunch she had 2 bites of hot dog and a spoonful of peas. I know it sounds pretty pitiful the amount of food she is eating but you have to remember that she is getting her full supplement of TPN feeding and some formula via her NJ tube, so she is never ever actually hungry. The plan for feeding is to slowly get her up to speed again with the formula through the NJ tube so that they can withdraw the TPN feeding. While that is happening we are trying to get her to take food by mouth but it is really difficult because she is full from her other feeds. It will work itself out eventually but our goal for now is to get the TPN infusions stopped as soon as possible.

Around 3.45pm she suffered through a really bad belly cramp. This was in the upper belly, there was no nausea with it just pain and it lasted around 10 minutes total. We figure it is just her belly complaining about being used again and hope that it is nothing more than that.

Dinner has just arrived, going to try and get some of that in her belly now. I wonder how many teeny-weeny bits I can get her to eat? :)

Love Mandy

twinmum

03-30-2009, 07:03 PM

Mandy: as always, thank you for the update. Our son Mark ahs a g-tube that is now used only to supplement his nutrition at night, but there was a time when about 80% of his nutrition was by g-tube. At that time, we were desperate to have him continue to put food - just about ANY food - into his mouth, just so he wouldn't give up. I'm sure you celebrate each and every one of those bites! Still, I think Becca is a successful eater who appreciates the taste of things she knows she likes - we just wanted to get to that point, as we figured it meant he would always east something, and we just had to work on quantity.

I hope the nausea continues to be hold at bay adn the tummy cramps go away too. Sounds like she had a busy day!

Alison

jenb1023

03-31-2009, 02:32 PM

Glad to hear the nausea has gone away and that things seem to be improving though I am sure to you guys and Becca it probably seems to be taking forever.

Thanks for the update and :hug: to all of you!

llurgy

03-31-2009, 05:12 PM

Day 54 (March 31, 2009)

The morning started full steam ahead. I arrived at 7.45am to find that things were in full swing getting Becca prepared to go down for her MRI of the brain. Becca went down at 8am and straight after the MRI was wheeled in her bed to ultrasound to have her belly echoed. It was amazing really, no-one back up on the unit could actually believe that she had had 2 procedures done back to back without having to come back up to the unit in between.
Becca finally got back onto the unit at 10.30am just in time to see the man who had arrived to evaluate her for her wheelchair. This evaluation went on until just after 12pm.

At 12 noon her respiratory therapist came to give her the vest treatment......and then the Infectious disease doc came in to see how she was doing and to kind of discuss her antibiotic regime. The MRI showed that the abscess was actually shrinking but it probably wouldn't disappear altogether due to it filling with blood at the time if the original surgery. Infectious diseases said that she would probably only need to be on antibiotics for another 10-14 days and that they would MRI her again about 2 weeks after the antibiotics have finished. Infectious diseases couldn't understand her reaction to the Penicillin she had been having. Throwing up and spiking fevers is not a known reaction to the drug. The evidence proves otherwise because she has not even felt nauseous since the drug was withdrawn and her fever spikes also ceased occurring at the same time. The infectious disease doc was also wanting to get in touch with Becca's specialist in Yale to talk about long term antibiotics to try and lessen the chance of another brain abscess occurring.

Even though she has been ill for the past few weeks and has not been able to participate fully in her therapy sessions her preliminary release date has not changed this week (We get a progress report from the therapists' weekly get together) so we are still on target for April 29th. Hopefully she will carry on gaining strength and be able to do her therapies to her full extent. She really needs to work hard, because if she doesn't we fear that her release date will be put back to sometime in May. As it is we feel that the release date as it stands may have just been an omission and they just forgot to change it when they discussed her progress......or lack of.

Becca has worked hard today in between all the other tests and treatments, she stood for thirty seconds with minimal help and also managed to walk a few steps with more help. She made a visit to the bathroom which is harder than it sounds. She has to transfer from bed to chair, get into the bathroom which is all the way around the other side of the bed (and the bathroom is really big). Transfer out of her chair onto the toilet, hold herself up whilst on the toilet and when finished transfer off the toilet into her chair and get back to the bed, out of the chair and into bed again. As you may guess, she has to give a lot of warning time when she needs to go because as well as the travel distance and transferring we also have to contend with an IV pole filled with 6 infusion machines.

Becca's hard day of labor finished with her enjoying a relaxing half hour of massage therapy, she looks forward to this time every day and knows that she is finished for the day, after her massage she is totally useless for a while, she just wants to doze and carry on relaxing so when David gets in from work she is usually zonked for a while and he is lucky if he even gets a hello out of her. :)

Love
Mandy

maroo

03-31-2009, 06:13 PM

That is great news that the brain MRI went well!!!! :)

Bless her...I know about that bathroom stuff...is it quite a trip to get yourself through all of that stuff when you are in the hospital and such! :)

It sounds like she is doing MUCH better! Tell her way to go !!!!

We are still praying!

eyor44

03-31-2009, 11:05 PM

Wonderful reports of progress Mandy. Thank you. I am so glad she didn't have to have any of the procedures this week (as I am sure you are also). Praying for a wonderful week.

llurgy

04-01-2009, 05:42 PM

I went across to the hospital this morning at 7.45am and Becca was snoring away. I gave her 5 minutes more then wished her a good morning. She stated that she had slept "so-so" because she had had some "hot flashes" in the night. She does tend to run a little bit warm anyways and she likes to have a pillow on each side of her. The pillows are plastic under the cases and we think these are adding to the hot flushes she is experiencing, added to the fact that she is over extending the capacity of her diapers so she is insisting that she have those plastic backed scut sheets under her. So she is surrounding herself with heat inducing plastic and it is no wonder she is getting hot in the night.

About 8.20am her nurse pushed a dose of Prevacid (a new medicine used to prevent ulcers) through her NJ tube, it was pushed very slowly but about 1/2 way through she started experiencing rather severe stomach cramping. The rest of the medicine was pushed through but we are now on alert to see if the same thing happens next time it is given. Becca experienced several cramps throughout the rest of the day. At the same time as this new medicine was introduced they started to up her formula feeding through her NJ tube from 30ml per hour to 50ml per hour. This was being done in 5ml per hour incremental doses instead of the previous 1ml per hour increments. So, the cramping could be a result of the higher NJ tube feeding or the Prevacid, they are keeping an eye out for changes but in the meantime her formula feeding is still climbing in volume but now only being upped at 1ml per hour instead of the 5ml per hour.

In Physical Therapy this afternoon Bic apparently did wonders. I unfortunately was not there (gone to lunch) but I had the story told to me by a very, very proud Becca!! Becca had stood up out of her chair, walked four steps to the raised mat in the Gym, pivoted and then sat on the raised mat, all by herself!!!! No aid, no person, no walker!! She then had to take a five minute break laid down on the mat but did leg exercises whilst resting. She repeated the return journey to her chair but required a little help pivoting and sitting back in her chair. She was so proud and was bursting to tell me when I returned from lunch. I was really bummed that I missed it all but Becca said that I could see it all the next time.:goodvibes

At 2pm Becca did another bathroom visit,chair around the bedside and into the bathroom, stand, pivot, sit on the toilet......everyone leaves her to it and then everyone piles back into the bathroom to repeat the procedure in reverse. It would only need one person to help if it were not for the pole with all the machines on it and the six or seven tubes that lead from Bic to that pole. Poor Becca has to state at least 15 minutes in advance that she needs the bathroom otherwise we would never be able to get everything done in time.

Becca has slowly been getting much better, the stomach cramps today were a worry but we will see what tomorrow brings. Hopefully they will be all gone except for the odd twinge here and there. The odd twinge we can handle but the cramps this morning were doubling her up in pain.

Today and yesterday she worked on a pillow project, she had to make a small round pillow by tying pre-cut fleece together, stuffing it then gluing on a face. She sat last night diligently tying knots in the fleece whilst watching TV, she then stuffed it and finished tying before we left last night. Today she glued the face on, she loves it and now wants to make another.:rotfl:

Love
Mandy

jenb1023

04-01-2009, 08:55 PM

Hi Mandy!

Way to go Becca! :banana::banana::banana:

What a great report from PT! I will keep my fingers crossed that everything just gets better from here.

kimmylaj

04-01-2009, 09:39 PM

so glad to see that becca is doing so much better... and tell her i need a picture tutorial on the little tied pillow, because last time i tried a blanket like that i was a major failure

Khalana

04-01-2009, 10:27 PM

Yay Becca!!! :) You must be very proud of her! She's a fighter all right. :) The pillow project sounds like fun. :goodvibes

eyor44

04-02-2009, 06:00 PM

Just visited the web site (haven't been in a couple days) and I love all the new pictures. How wonderful Becca looks. What is she painting? Looks like a Japanese (?) lamp? Can't wait to see a pic of the pillow she made. Love the new chair also.

llurgy

04-02-2009, 07:15 PM

Day 56 - 60 feet (April 2, 2009)

Becca awoke in a so-so mood this morning. She said she had had a restless night due to "output" issues :o) Too much liquid and not enough absorbent material.

She has still suffered through belly cramps throughout the day those she had more in the morning hours than the afternoon.

In PT today she sat on the edge of the bed, got off the bed to a walking aid and walked about 5 to 6 feet before having to sit on a chair. After a small rest she walked another 5 to 6 feet to her wheelchair that was parked in the corridor. She was so good at it and felt really exhausted and had headache afterward but she still persevered to her next therapy.

In PT this afternoon she was feeling really crappy, she only just sat at the edge of the bed and was moaning throughout. With five minutes left to spare she made an heroic gesture and stood up for a full five minutes with only minimal support from the table. She was feeling so badly after doing this she nearly threw up the poor baby.

Around 2.15pm we went to outpatients clinic to have a dental xray of her mouth to try and find out what they are going to do about an AVM in her mouth. We think that it may be this AVM which allowed the infection into her bloodstream, thus seeding the brain abscess.

Becca was amazing this evening. We went down to grab some dinner in the cafeteria around 6.15pm but before we went we warned Becca that she hadn't done her bathroom visit for the day and that when we returned she would need to do it whether or not she needed to go. When we returned she was just bursting to tell us that she had done her bathroom visit but better still she had got there using the walker instead of the chair! The toilet is about 30 feet away from her bed and she used the walker both ways, a 60 feet round trip!!!! She said that she collapsed in bed when she got back to it.

iu97alum

04-03-2009, 03:15 PM

WAY TO GO BECCA! She must be SO excited! :) :) :) Sending our love from Texas!

llurgy

04-03-2009, 03:18 PM

Day 57 (April 3, 2009)

Came into Becca's room this morning at about 7.45am, she was still sleeping. Woke her up at 8am and almost immediately she started to feel nauseous - five minutes later she was throwing up.

Fortunately it seemed that this was a good thing as she said that it was good she had thrown up because she didn't want to go through the whole day feeling horrible and it was better to get it over and done with.

We then set to getting dressed, which Rebecca did herself. After getting dressed she decided she needed the bathroom, so off came her pants :) She used the walker to get to the bathroom, used it in private and was tired she we took her back to bed in the chair. She did however mange to get back in bed from the chair with no assist at all.

She did her therapies all morning with only one major cramp around 11.15am til 11.25am.

At 11.30am she went down down to the schoolroom. Yesterday and today she did some academic tests. Yesterday was reading word lists and today it was reading comprehension. In both she scored at 7th grade level which is really good.

Therapies this afternoon consisted of Becca in bed with sitting on the edge of the bed and standing in between stomach cramps, the cramps seem to be lessening overall but they are still interfering with her therapies. The good news is that when she hasn't got cramps she does work as hard as she possibly can, she says she is taking advantage of feeling good.

In therapeutic recreation she is working away at her second monster pillow, she plans on doing all three but she may have trouble finding the third one as there don't seem to be any left of the monsters. She does enjoy the tying, she watches TV at night, tying her knots. She looks a bit like a little old woman with tying instead of crochet :)

maroo

04-03-2009, 03:53 PM

I totally missed yesterdays report!!

:cheer2: Congrats, Becca!!!!!!! :cheer2: 60 feet is AMAZING!!!!! :cheer2:

I am sorry that Becca continues to feel sick a lot! :( But I am glad she is scoring so well on her tests!! :teacher:

Hang in there! :)

jenb1023

04-03-2009, 04:26 PM

Two pretty good reports! :banana::banana::banana:

I hope the stomach issues continue to improve. Great job on the walking and test scores!

ndloewen

04-03-2009, 10:32 PM

Still praying for you all. Hang in there!!

TwistofLemon

04-04-2009, 01:06 AM

Becca, you know you're going to have to post pics of your pillow projects on the Disboutique board. You know how much they love pictures!!

David, I had to lol at your description of Becca looking like an old woman crocheting....I love to crochet!

It's great to hear all the good news:yay:

llurgy

04-05-2009, 11:34 AM

Day 58 - Blah (April 4, 2009)

Bic was bright when David arrived first thing. She said that she had felt poorly during the night however and needed to have her tube feed switched off twice, so she didn't feel particularly well rested. Her feed rate had been all the way up to 37 ml/h, which is about half of what she needs if she was on tube feeds only.

For breakfast she has half a teaspoon of omelet and a piece of bacon. After spitting the bacon out, she proclaimed that she no longer liked bacon! The only other thing she had this morning was a quarter cup of ice!

She had plenty of time to get her teeth brushed and changed into her day clothes. The first session was PT at 10.00. She did about 15 minutes of leg exercises on the bed before getting into her chair and going to the gym. The act of getting into the chair made her stomach feel "swishy" and that never relented through PT. In the gym, Bic reluctantly stood by a table for 30 seconds before collapsing back in her chair. She complained of a headache that continued through Speech Therapy and into Occupational Therapy.

Bic was given Tylenol for her headache.

In OT, she was given some finger exercises in the form of therapeutic putty. She managed that okay, but she complained a lot for the whole half hour.

She was glad to get out of her chair and back into bed straight after at 11.30am. There she rested for the rest of the afternoon and evening. She didn't want to do anything after that. Bic had bright moments, but they were few and far between. She put off everything that was offered until later or tomorrow. Her complaint continued to be with her stomach that felt 'different' and unsettled.

By the end of the day, Bic's feed rate through the tube had been stepped back up to 37 ml/h.

The only other event of the day entailed giving Bic's hair a wash in bed. She wasn't happy about this, but had it done all the same. The waterproof pillows they use in hospital are causing Bic's head to sweat and her hair is getting very greasy. They have a no-rinse shampoo, which does clean the hair, but it seems to make it look worse. In all she did actually enjoy the hair washing, it relaxed her and made her feel good.

llurgy

04-05-2009, 11:35 AM

Last night, Bic had some sleeping medicine before we left. She was desperate to have a good nights sleep. This morning, she reported that she had a better night than the previous, but still not that great. She had some stomach cramps and her headache was still an issue.

Yesterdays offer of a bath was again put off until tomorrow. Bic managed to get dressed and she took the initiative to brush her own teeth after the 'equipment' was left on a table by her bed.

Bic had no interest in breakfast.

The attraction of going down to the gift shop later might be enough to encourage her into the wheelchair.

Early this morning when we spoke to the doctor, he said that Bic's antibiotics would all be stopped tomorrow and it would be replaced with a prophylactic oral antibiotic. He also reported that her belly sounded better than the other day, so maybe that is on the 'mend'. He also spoke of giving Bic a suppository to help 'clear her out', but as of 11am nothing has happened!

One of the PCA's brought Bic an ethnic head dress in to wear - Bic pronounced that she is now a nun!

llurgy

04-05-2009, 08:10 PM

Day 59 - continued (April 5, 2009)

Bic passed up on lunch - nil by mouth at all so far today!

The afternoon was much of the same - feeling unwell every time she moved, her stomach and intestines cramping up. Bic did get out of bed and sat on the sofa for a few minutes whilst her bed sheets were changed, but she complained about feeling unwell for most of the time she was there. She immediately got back into bed and vegetated for the remainder of the afternoon. Bic did manage two Teddy Grahams mid afternoon, but not even the ice is an attraction now.

After many distractions during the afternoon, Bic finally received her suppository. After the treatment, which incidentally she hated, her cramps appeared to go away and it was soon after this that she wanted a cup of ice to chomp on. The cramps did keep coming back during the evening as the suppository continued to do it's job.

You can't blame Bic for not being very happy. All she had to look forward was un-plugging her feed tube, a belly 'stick', a vest treatment, changing her PICC dressing and probably another night of discomfort and no sleep.

Bic's demeanor continued to be subdued through the rest of the evening having had a pretty poor weekend overall.

MickeyReeds

04-05-2009, 08:42 PM

Just wanted to let you know I am still praying for you all! Hope you have a better week! Hang in there!

twinmum

04-05-2009, 10:23 PM

Becca, Mandy and David...just wanted to let you know that I continue to pray for you all...one of the very first things I do each day is to check to see if there any any Becca updates. It has been such a touch slog for all of you...and away from home to boot. Not sure if you have read our thread about Mark's Wish Trip and the facts leading in, but Mark and Douglas are our twin sons, now age 9, who were born >3 months early. Mark has cerebral palsy, and other related medical issues.

Sometimes I wondered if people remembered we were still in hospital - we were there 3 1/2 months before the boys made it home. It was lonely (don't tell anyone here we felt forgotten!!!). I wanted to mention that to you so that you know that you have ever so many friends, including us in "virtual land" who care and pray and hope to see improvements every day, little steps to take all of you closer to home.

thinking of you,
Alison

teresajoy

04-06-2009, 12:07 AM

I'm so sorry Becca is still not feeling well. The poor girl, I bet she is beyond ready to get out of that hospital! :hug:

MAGICFOR2

04-06-2009, 03:37 AM

I'm stil praying. Some good progress!:thumbsup2 I'm sorry Becca is having some hard days and not eating well. I'll be praying that her stomach will mend an the tube feedings continue to be reduced so she gets her appetite back!

jenb1023

04-06-2009, 09:45 AM

I was so hoping that you all had a good weekend! I am sorry to hear that Becca's stomach is still troubling her. Tell her everyone on the DIS is hoping and praying for a speedy recovery for her!

llurgy

04-06-2009, 05:09 PM

Thank you all for your continued support, I do know you are still all praying and reading, it is enough to know that, honestly :goodvibes

If you read the updates you may all see differences in writing styles, this is because some days I write the updates and sometimes David does but it always says posted by David because we are logged on the site as administrator and that is David, so sometimes I am actually David :rotfl:

Today I came to the hospital and Becca was still asleep, I greeted her after around five minutes (I was bored) and she slowly came around to say Good Morning. I asked if she had slept well and she said she had slept well for which little time she was given but a lot of the night had been taken up with 4 lots of total bed linen changes. She is on so much liquid that her daiper cannot possibly hold the output. During the day it is not so bad as I can change her immediately but in the night, even if the call button is answered as she is peeing they just don't get there in time to stop the leak. She is being given a little less liquid today.

The drama of the blocked feeding tube continued into this morning. Last night the nurses tried numerous ways to try and get it unclogged, Water, Sprite, Coke.........Coke was left in it overnight to see if it's magical properties of getting oil off driveways would help with the stubborn clog but it was still clogged up this morning. They had one more thing to try and if that didnt work it would be down to intraventional radiology to have another tube placed. The "Draino" for NJ/NG tubes was brought in. It was put down the tube and left for one hour to do its job. After an hour and a lot of pushing and pulling sterile water the clog finally let go!!:dance3:

All of Becca's IV antibiotics finished today!! All she has to take now is one antibiotic via her NJ tube (orally eventually), she will be on this for around a year or more, it is more of a prophylactic (preventative) that an antibiotic to treat current infection.

The stomach cramping/nausea still continues...... Not so bad today as she still hasn't had any feed going down her tube because of the clog issues earlier in the day, but cramps and nausea are still with us. She felt nauseous this morning and was given Zofran and again this afternoon at around 4pm when again she was given Zofran. Because all last week she wasn't really tolerating her formula, I put it to the doctors that maybe we could try the formula she was on previously which up until the Penicillin issues she seemed to tolerate quite well, so today she will go back to the Jevity at around 25ml per hour, they are going to raise it by 5ml every 4 hours until she reaches 40mls which is what she was at yesterday before the tube blocked up. The doctors are still saying that the stomach cramps and intermittent nausea due to her belly/gut trying to start its regular work again, so we shall sit tight for a while and play the waiting game in hopes that her belly and gut will sort itself out.

Becca HAS done most of her therapies today, headaches have played a big part in stopping her though......Saturday, Sunday and today she has complained of mild to severe headaches, she went through a couple of days worth of bad headaches last month though, so again we play the waiting game to see if they resolve themselves.

Love Mandy

twinmum

04-06-2009, 05:23 PM

As always, thank you for the update. Man, you guys are hanging in there with such fortitude!

I hope you'll understand that it was empathy and my own memories of our own frustrating but ridiculous rounds with unclogging Mark's g-tube. I remember pulling out all the stops one night, OJ, coke, nothing worked. The ridiculous part was that the clog itself was CAUSED by an overly careful doctor who didn't do some extra homework. Mark has been in the ER with a pneumonia that wouldn't budge, a high spiky fever (104-105) that wouldn't drop with anything etc etc. Yes, xrays proved this was pneumonia. Yes, his twin brother also had pneumonia, as also proven by xray. But NO, this doctor (the fellow) could not be convinced that this was really probably a VIRAL PNEUMONIA,not a baterial pneumonia. Gee, 2 pneumonias in the same family. Hmmmm...I'm thinking shared germs, aren't you? He insisted on using a wide-spectrum antibiotic right away, as soon as we got home.

Anyway, if you have a tube of any kind, and anyone suggests putting Biaxin down it, RUN, DO NOT WALK...and get the attending, get them to actually check it out and make sure it is suitable for tube use! The end result was that my sick boy (who couldn't manage meds by mouth at that point) had to go back to the hospital, visit the gtube nurse, get a new tube placed (at least this part was easy as it's a g-tube that gets changed every several months, I do them now). It was easily 12 hours of miserable fever etc before he got his antibiotics.

OK, enough vent. I hijacked your thread!

Take care,
Alison

llurgy

04-06-2009, 07:44 PM

Oh you poor things!!!:headache: Stoopid doctor!!

Becca was so relieved this morning when her tube became unclogged, she is scared stiff of having it removed and replaced whether it be bedside NG or intraventional NJ, both ways make her beside herself with worry. Meanwhile we cross our fingers and hope the existing tube lasts the duration.

Becca had her massage at 4pm and fell asleep as usual. When she woke up she complained of a really bad headache so Tylenol was given through her NJ.....Because of all the clogging issues and only just managing to save the tube AND Tylenol being so thick they flushed with about 25ml of water after giving it........ one minute later and she is throwing up....again!!! Becca is so intolerant of volume in her gut at the moment it has to be seen to be believed.
The only good thing is that because it is a NJ tube the Tylenol stayed put:lmao:

josabbimommy

04-06-2009, 09:00 PM

Hi all,
We are in the early stages of a M-A-W trip, maybe I shouldnt even be posting yet but I cant wait!:cloud9:
I am so excited for my Daughter! We have just be told today via a phone call that our 12 year old daughter Rebecca has qualified for a Wish.

We haven't a date yet, in fact we haven't even been assigned volunteers yet but we don't care, she has a WISH!

All this started only last week when I asked a question about certain booking dates for WDW on the planning forum. Becca has some disabilities and so we were wanting to go at the quietest part of the year so she wouldn't have to spend all of her precious energy waiting in lines. Several people suggested we try to get her a wish, I just pooh-poohed the idea as not being conceivable but after a neighbour suggested the same thing I thought well it cant hurt to try.
I filled out an online referral last Thursday night and I received a reply on Friday morning asking for more detailed info.
I sent more info and received a phone call on the following Monday saying that she had gotten through the pre-screening process and now it would be dependant on what information our Doctor supplied them with as far as qualifying.
They sent forms out for medical information release on Wednesday, they were filled in and sent back by yesterdays mail. They must have received it this morning, faxed it to our Doctor, he must have written his referral and faxed it straight back as we got a phone call this afternoon telling us that she had qualified for a Wish! Whew speedy or what??

It was the same way for us! Our lady filled the form out and sent it in and they called me the next day! They sure are quick in that department!

josabbimommy

04-06-2009, 09:14 PM

What's the big give? And what's a dis boutique?

dvc at last !

04-06-2009, 09:32 PM

I check this mail each day, and pray that all is well.
Take care.

:cool1:

josabbimommy

04-06-2009, 09:52 PM

llurgy

04-07-2009, 11:20 AM

Becca, Mandy and David,

I really can not even imagine how you have any shred of patience left. Where do you find your strength?

Great news that Becca has felt better today! I hope you get better and better every single day!

I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful! :confused: Not sure how something can be both at the same time, but that's the way my mind works! :laughing:

Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.

I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic. :hug:

God Bless, Best Wishes, Good Luck, and Stay Strong!

The pillowcases arrived today!!!! Becca loves them! She especially likes the Cat one in the pink and the black and the one with the fireworks on one end.
We will take pics later today, but suffice to say she loves them all, thanks so much for them:hug:

llurgy

04-07-2009, 08:59 PM

Day 61 - Don't Push (April 7, 2009)

This morning when we arrived at the hospital, the night nurse commented on how well Bic was doing. This was confirmed when we entered the room. Bic was bright and bubbly and ready to go.

This all changed when she received her meds - about 20 ml pushed down her NJ tube. About half way through a slow push, Bic asked the nurse to stop. Her nausea and belly cramps had returned. This was a turning point. We asked that no more meds be pushed until we had talked with the rehabilitation doctor.

It took about an hour for Bic's belly to recover, but it did get better over the course of the morning. For therapy, Bic sat on the edge of the bed several times and for good periods of time. She complained a bit, mainly due to neck ache.

Mid morning, Bic was part of a photo shoot with Ansley the therapy dog. A professional photographer took pictures of Ansley, the speech therapist and Bic on the edge of her bed playing a game. If accepted, they will be used on a therapy dog calendar!

We had a chat with Bic's rehabilitation doctor about the problems with belly pains and established that meds would no longer be pushed. They are now going to be incorporated in her regular formula feeds and fed at a more sedate pace. We also talked about trying to accelerate Bic's desire to eat and agreed that cutting back on her TPN feed might accomplish this. The doctor explained that simply cutting the TPN out wasn't a good idea because it would cause a sugar crash, but they would reduce it over several days. There was also talk about possibly changing the NJ feeding tube back to a NG tube (i.e. back into the stomach) to reduce the direct loading on her small intestine. This would be deliberated more over next next week.

The doctor also put another spin on the possible cause of Bic's belly cramp problems - it could be psychological in that her anxiety could be causing some of the problems. This is certainly true because Bic is now terrified of doing anything physical for fear of causing the belly cramps and ruining another day or night.

This afternoon in PT, Bic was asked to walk a few feet from her bed to the wheelchair waiting for her at the door to her room. The walking frame was placed by the bed to help her. Bic was terrified and cried pitifully. She was afraid of the consequences having had a reasonable day to that point in time. After a lot of coaxing, she finally got off the edge of the bed, tears running down her face, and walked to the wheelchair. The therapist was there to give her support, but Bic managed to do it without any holding or propping up.

She then drove her wheelchair down to the speech therapist's office for a memory game. There were no smiles though all of this and it turned to tears again when she was asked to stand at the table for a short time. Again, there was lots of coaxing and encouragement to get her to stand, which she eventually did for 40 seconds. She complained that her belly was "gurging" as a result of all these body movements and also said that she had a headache.

Once back in the wheelchair, she went to OT in the gym. There she stayed in her wheelchair doing arm exercises.

On returning to her room for a half hour break, still in her chair, we had an appointment with the wheelchair store to discuss options for when Bic is discharged from the hospital. Bic was very unhappy about us leaving - she didn't want us to leave, so there were even more tears!

It was about three hours later that we got back to Bic's room to find her asleep. When she came round, she was a bit off, which is normal for when she is first coming round.

After a while, Bic was ready to have a little to eat - meatballs, then since it was getting late, prepared to go down to the gift shop for the visit that never happened this weekend. Bic complained a lot getting into the wheelchair, but we finally got moving. Tonight, she bought a small cuddly dog, then we headed back to the room. She complained of a "swishy" belly, which isn't as bad as a crampy belly. It just means it is unsettled. Once back in bed, she said that she had a headache, but wasn't thrilled about having Tylenol pushed through her feeding tube, so passed on this option. She wasn't impressed with the chewable alternative of bubblegum flavor either!

The headache passed fairly quickly on its own leaving only one irritation for Bic to worry about - a badly leaking feeding tube that gets worse by the day!

jessica52877

04-07-2009, 09:09 PM

I also wanted to say that I am still reading and praying every day! I appreciate the updates!

Khalana

04-07-2009, 09:33 PM

Still thinking about you guys and praying for you too! :)

my2disneyboys

04-07-2009, 10:23 PM

TwistofLemon

04-07-2009, 11:52 PM

The pillowcases arrived today!!!! Becca loves them! She especially likes the Cat one in the pink and the black and the one with the fireworks on one end.
We will take pics later today, but suffice to say she loves them all, thanks so much for them:hug:

Yay!
I'm kind of partial to those kitties on the hot pink, too. I'm telling my age here, but I remember when I was a teen, a friend had a clock that looked just like those cats. And, the tail swung like a pendulum with every second that passed. Anyone else remember the seventies?? Wish I could find one of those clocks now! :lmao:

Anyway, I'm glad they finally arrived, and really glad Becca likes them. You are more than welcome!

The3rdDisneyBoy

04-08-2009, 12:54 PM

Hi Mandy, David, and Becca...

I am My2Disneyboys' husband and this will be my first actual post on the board. I read your entire thread today (when I should have been working) and wanted to pass on my prayers and thoughts. Your daughter is a beautiful, strong, obviously wonderful little girl and your family amazes me with its patience and grace during such a trying time.

Its been amazing to read through your struggle in a couple hours as I know, for you, this all must seem like an eternity. To go from what started as a trip report, to the awful first days during and after surgery to hear how Becca has pulled through all of this with such spirit. And this spirit, with each post, has become less and less surprising because of the obvious natural fight Becca has in her soul. Thank you for sharing this with me.

Echoing my wife's sentiments, we are going in 4 weeks to Disney and would love to know if Becca would like anything.

I will be watching this thread daily, I am sure. Good luck and God bless.

jenb1023

04-08-2009, 01:02 PM

Hi Mandy!

So sorry to hear Becca is still struggling. I keep hoping every day will get a little easier. Tell her all of your DIS friends are sending good thoughts and prayers her way and that we know she is such an amazing young lady that she can overcome anything!

Hang in there!

maroo

04-08-2009, 01:54 PM

llurgy

04-08-2009, 05:17 PM

Day 62, April 8, 2009

Went across to the hospital at the usual time this morning and Becca was feeling ok. She had a few stomach cramps because she had just had a bowel movement but generally she was fine. This was until she had to take some antibiotics by mouth.....She hated them and they made her feel nauseous.

As of last night her NJ tube was classed as totally clogged and so the plan was to replaced it with an NG tube late morning rather than the NJ tube into her intestine. We didn't tell Becca what was going to happen until the time it was happening as it would have worried her all morning. As it was, when they told her she freaked out and kept saying, "No, no, no, no, no......" They placed it and now she has a brand new tube, clog free and especially leak free!

Becca's preliminary discharge date has been April 29th for the past 3 weeks, because of all of her off days where she has not done much therapy it was thought that she would have to stay longer, but they have managed to work out a way for us to have "In home" rehab care to do any fine tuning after the 29th and so our discharge date is still April 29th with her rehab carrying on at home! Becca is ecstatic over this news as her BIRTHDAY falls on April 30th and she did NOT want to spend it in the hospital. We were trying to make the idea more palatable by saying she would get two Birthdays if in hospital on the 30th but it only mollified her a little. Now, she shouldn't have to worry about it unless some medical issues stop us from leaving on the 29th.

Becca is allowing me to go home tomorrow for the day, she doesn't want me to go home but I said that if she doesn't let me go home and shop and research some gifts online then she wont get any Birthday gifts, so in a totally altruistic way she is allowing me a day off form the hospital to shop for her :lmao:

Love Mandy

llurgy

04-08-2009, 05:23 PM

Hello! What a wonderful, strong, and loving family you have! I have just read through the entire trip report- which has become so much more.... and my heart just bursts for all of you. I have two little boys, and your story here truly makes me appreciate everything just a little bit more. We are going to Disney in May and I would love to send Bic a postcard or anything that would make her smile from Disney.... if there is anything - please let me know!!!

Becca would adore a postcard, She loves Eyeore, Tigger and Mike Zowhatchamacallhim from Monsters Inc.
I will shoot you a PM with our address...thank you so much for thinking of her.

We have come to realize, even before she got sick that most people in this world are good, kind, generous and loving.

We have been given so much love from church and the disboutiquers and loads of people on these boards, our hearts are overflowing with prayers, kind thoughts and gifts.....it makes my heart sing but my eyes cry with happiness.

Mandy

llurgy

04-08-2009, 05:30 PM

Yay!
I'm kind of partial to those kitties on the hot pink, too. I'm telling my age here, but I remember when I was a teen, a friend had a clock that looked just like those cats. And, the tail swung like a pendulum with every second that passed. Anyone else remember the seventies?? Wish I could find one of those clocks now! :lmao:

Anyway, I'm glad they finally arrived, and really glad Becca likes them. You are more than welcome!

I know EXACTLY the clocks you are talking about, I think the ones I remember the eyes also moved from left to right in time with the tail.

Love Mandy

llurgy

04-08-2009, 05:34 PM

Thanks for the updates. I'm sorry to hear that she's still in the hospital. I know what it's like to spend months of your life in the hospital. It's hard. I'm new but I'll be a cheering section. Everyone needs a little motivation!

Thank you for cheering us on, we do appreciate it! I think we need a football Stadium to fit all of our supporters in now :)

llurgy

04-08-2009, 05:41 PM

llurgy

04-08-2009, 05:43 PM

maroo

04-08-2009, 06:03 PM

I just had to post a message about nothing :goodvibes
I just happened to look to the left and I noticed that my post count was 499, so I just had to post my 500th one about absolutely nothing at all because I just wanted to. :lmao::lmao::rotfl::rotfl::lmao::lmao:

CONGRATS!!!!!!!

You are now a DIS Veteran!! :)

Woo Hoo!!!

:woohoo: :yay: :dance3: :cheer2: :cool1:

MAGICFOR2

04-08-2009, 06:06 PM

I just had to post a message about nothing :goodvibes
I just happened to look to the left and I noticed that my post count was 499, so I just had to post my 500th one about absolutely nothing at all because I just wanted to. :lmao::lmao::rotfl::rotfl::lmao::lmao:

CONGRATULATIONS!:cheer2: You have to celebrate the small stuff, right? I'm still praying and lurking to see Becca's progress. Thanks for keeping in touch and God Bless you!

my2disneyboys

04-08-2009, 06:31 PM

Becca would adore a postcard, She loves Eyeore, Tigger and Mike Zowhatchamacallhim from Monsters Inc.
I will shoot you a PM with our address...thank you so much for thinking of her.

We have come to realize, even before she got sick that most people in this world are good, kind, generous and loving.

We have been given so much love from church and the disboutiquers and loads of people on these boards, our hearts are overflowing with prayers, kind thoughts and gifts.....it makes my heart sing but my eyes cry with happiness.

Mandy

Mandy,
It sounds like another hard morning for Becca. (and for you guys)
We are thrilled to be able to send a post card from Disney. We are having Breakfast at Crystal Palace so we will try to get them to sign it!! I told my son Myles about Becca and he is really excited about getting her postcard and sending it from Disney. (Make sure you send me a PM please!!) I will be keeping Becca in my prayers and hoping for a better tomorrow for her.

The3rdDisneyBoy

04-08-2009, 07:01 PM

Awww, you made me cry :sad1: thank you so much for your words of support, they mean a great deal, even more so coming from a "lurker' and a husband of a poster, I am honored :)

I finally got around to answering your wife in requesting a postcard for Becca, I just have to remember to PM her my mailing address now :)

Thank you so much, God Bless you and your lovely family

Love
Mandy

Oh...well, sorry for making you cry. I do the same to my Mom when I write her holiday cards. Its a talent of mine.

But the words were from the heart. And I am glad you are sending the address.

llurgy

04-10-2009, 01:35 PM

Day 63 - All Alone (April 9, 2009)

Today, neither of us were at the hospital until around 6pm. David went to work and Mandy went home to try and sort out/research what we were going to get Becca for her Birthday at the end of April. Becca wasn't very happy to be left alone all day but she knew that if she didn't allow Mandy to go home then she would not get anything for her Birthday.

When we arrived at the hospital this evening Becca burst into tears! Nothing bad had happened it was that she was just so happy to see us again.

From what Becca's nurse told us, Becca had thrown up as soon as she woke this morning - Becca stated that it was due to "gunk" at the back of her throat rather than a queasy belly. She struggled through her therapies this morning, she felt a Little nauseous around 11am but some nausea medicine worked to settle her stomach. She had a rest at lunchtime and miraculously recovered 100% to do all her therapies at full speed ahead this afternoon. As well as therapies she also painted Easter Eggs and went on an Easter Egg hunt in the play room with some of the other kids on Re-Hab. When we arrived, except for the "so pleased to see us" crying she was in fine spirits and in a really pleasant mood.

The3rdDisneyBoy

04-10-2009, 01:48 PM

Sounds like a pretty good day then. Tears are ok, so long as they are happy ones, eh?

I am glad to hear that Becca has had some activities to keep her mind off things. How did she do in the hunt?

llurgy

04-10-2009, 05:08 PM

Sounds like a pretty good day then. Tears are ok, so long as they are happy ones, eh?

I am glad to hear that Becca has had some activities to keep her mind off things. How did she do in the hunt?

She made out well in the egg hunt, she scored five eggs after searching throughout the unit. She really enjoyed herself finding the eggs, but also enjoyed painting eggs too.

Today she has had another good day so we are all happy today and looking forward to the weekend when she gets a little bit of a reprieve from therapies on Saturday afternoon and all day on Sunday.

I am about 1/2 way through reading your families trip report, love the Disney nights yoiu have, such a neat thing to do.

Love
Mandy

llurgy

04-10-2009, 09:33 PM

Day 64 - Good Day (April 10, 2009)

Arrived at the hospital today to find Becca in a really good mood, except for the fact that it was time to get up.

She dressed, had two slices of apple and half a cup of ice for her breakfast and them brushed her teeth whilst doing her vest treatment. We were all ready to get her into her chair and down for her group meeting when the doctor came in to do morning rounds so we didnt make it to group until 9.15am.

After group we went into the gym to do her PT. She stood out of her chair with Maria her therapist holding only onto her belt and she played ring toss stood up. She sat back down again to rest and then stood again to play catch with a beach ball, she threw and caught 10 times and then sat down again. The therapy session finished with another round of standing up ring toss. She got a bit of an headache after PT, all that standing.

After ring toss she had occupational therapy with Suellen, she played Jenga which utilized stretching and manipulation and of course the steadiness of her hands.

Speech was next, she only did half a session before having to retire to her room because her head was pounding and she felt nauseous.

At around 11am she was given Zofran for her nausea and some Tylenol for her worsening headache before they whisked her off again to play Yahtzee in the activity room in the hopes that the Zofran would kick in to stop her feeling bad.

By 11.15am she was in good spirits again and playing Yahtzee.....some of the time sat at the table but some of the time stood up. She did well and won the game.

At 11.30am through until 1.30pm she had a long break due to some clinic meetings the therapists had to attend. She ate some lunch consisting of 3 bites of Spaghetti Alfredo before Mandy went down for lunch.

When Mandy came back on unit Becca was having a little snooze before her therapies started again at 1.30pm. OT consisted of threading beads and arm stretching exercises and was followed by speech where she played a game of respond. Last but not least she went into the Activity room for recreational therapy to play the Wii. She beat her therapist at every game they played bar one game so she was happy at that.

At around 5.15pm Becca ate dinner, she had quite a bit of Ravioli in comparison to what she has eaten previously, added to the slices of apple she had eaten mid afternoon she is doing really well with food today. She vowed to David last night that she would eat at least two bites from every meal that was put in front of her. She has excelled herself as she has done what she promised plus eating from the snacks that were ordered also.

Becca evening went along as smoothly as her day, we watched a movie and had a lovely evening (barring the vest treatment and the Lovonox shot in her belly). Hopefully tomorrow will be a "wash, rinse and repeat" day, but if not we are grateful to have had today as a really pleasant and enjoyable day.

Love Mandy

maroo

04-10-2009, 09:58 PM

Fabulous!

Sounds like she is doing so GREAT! Eating like a horse, I tell you! :thumbsup2

Way to go, Becca!!!! :)

Khalana

04-10-2009, 09:59 PM

I'm so happy that she had such a good day! :goodvibes She really is a trooper. And good for her beating her therapist at the wii. :thumbsup2

Happy Easter to all of you!! :hug:

jenb1023

04-10-2009, 10:32 PM

Glad to hear Becca had a good day! :cheer2::cheer2::cheer2:

kimmylaj

04-11-2009, 04:18 PM

i'm so glad to hear that becca had a good day. go becca for winning at wii. i never beat my family. lol

llurgy

04-12-2009, 01:02 PM

Sorry, yesterdays update a bit late

Day 65 - Fifty Four Feet (April 11, 2009)

Bic greeted us in fine spirit this morning. Just like yesterday, she was feeling good and wore a big smile.

The morning began at 8am prompt with a vest treatment. She still doesn't particularly care for these, but she is so much more tolerant these days. We are not sure they are absolutely necessary, but since they aren't doing any harm, why not. The respiratory therapist always seem to be telling us that her lungs sound better than the last time they listened to her lungs...

Immediately after it was time for OT. She got into her wheelchair and went to the gym. She was given the task of sliding rings on a hoop in the shape of an arc from one side to the other. She did that with the greatest of ease, so the therapist decided to make it a bit more challenging and attached a one pound weight to her right wrist and asked her to repeat it. That didn't work too well! She could hardly pick her arm up with the weight attached and the exercise was terminated immediately!

We then went to group therapy for half an hour, which Bic found fun because she was able to fully participate in the questions and answers.

On returning to her room, Bic was able to make a trip to the bathroom in her wheelchair, which is a goal for us to complete with Bic at least once a day.

Back in bed, we decided it was a good time to wash Bic's hair. Bic likes the feeling of warm water on her head, but she still imagines her hair very long and is always scared of water dripping from her hair hours after it has got wet.

PT was at 11am and the therapist wanted to see Bic do a big walk. Her goal was to walk from her bed into the recreation room twenty seven feet away! She was given a walker and David followed with a chair for when she needed to take a break. The longest walk was 15 feet before she needed to sit down. There was another ten feet to walk before reaching her destination in front of a Wii video game. Bic then played a couple of games on the Wii with David before walking back to her room. By the end of it, Bic was very tired, breathing heavily and her heart was pounding, but she did it without a complaint!

Bic then got back into bed and had a well deserved rest.

There was a nice surprise for Bic after lunch when she had a visit from one of her church friends and grand parents. They spent quite a while playing "Guess Who", then when it was time for them to leave, Bic got into her chair and we went a walk with them to the other end of the hospital. After saying goodbye, we walked back, which took us past the gift shop - guess where she wanted to go?

Back up in her room, Bic was ready for a nice rest! Bic didn't really do much more all day. She had a sleep, then when she woke, did a 100 piece jig-saw with a little help. She is still having problems with her sight and lining up jig-saw pieces is quite difficult. Even so, she managed to complete it in a relatively short time.

Bic did okay eating today. For lunch she had a few (five?) forks full of pasta. For dinner she had a similar amount of ravioli. Ice is still a big favorite - that is eaten a cup at a time!

Love
Mandy

jmskinner

04-12-2009, 01:22 PM

Go Bic, Go!:cheer2:

Thank you for continuing your updates, you are all in my prayers!

llurgy

04-12-2009, 08:50 PM

Day 66 - Bunny (April 12, 2009)

On the way out of the Ronald McDonald house this morning, everyone was being given an Easter package to give to their kids in hospital. Besides a bag full of goodies and a medium sized Easter bunny, we got a very large Polar Bear wearing a rabbit suit!

The large bear was what Bic fist saw when she woke up and was a big surprise.

Bic was in demand first thing. At 8am, the respiratory therapist was ready to give her a vest treatment, she needed her teeth brushed and the PCA was after her vitals. This is quite common now and the price of giving Bic a good nights sleep.

Something that we didn't mention yesterday was that going a full day without feeling nauseous was a first and another milestone.

Bic was eager to meet her goals as early as she could in order to have a clear day of relaxation. She went to the bathroom using her walker and really knocked the breath out of her. She returned to her bed by way of a chair and when she was able to lay back, her heart was pounding and she was quite breathless.

She was given training pants (pull-ups) as encouragement to make a return trip to the bathroom later. The one thing about cutting back on her tube & TPN feeds plus the elimination of major antibiotic doses is that she isn't going as frequently now, so it could be a long wait.

About mid-morning, Bic received a visit from the Easter Bunny doing his rounds at the hospital. Yet another bag of goodies to savor!

After all of this, Bic was in need of a long rest, so she lay back and closed her eyes for nearly a couple of hours to recover.

Yesterday, Bic expressed a wish to play on the Wii today, but it seems the hospital's console is locked up. A kind nurse surprised us this morning by bringing her Wii in for Bic to play this afternoon! We connected it to the TV and away Bic went with some practice games.

Then came in lunch. Bic hadn't done too well with breakfast, just a couple slices of apple. She made up for it with about 8 forks full of Alfredo.

This afternoon, Bic chose to play MarioParty 8 on the Wii, which she really enjoyed. There was just one event that caused a bit of concern. She was swinging the controller as though to hit a baseball, when she complained of feeling dizzy. She couldn't hold her eyes on a subject and they were flicking from side to side. It was as though she had been spun at high speed, then stopped suddenly. It only lasted a few minutes before returning to normal. The nurse reported it to the doctor, who said to keep an eye on it (pun?).

Ravioli was for dinner, but Bic wasn't in the mood for food this time around and only managed one piece.

Bic is scared about one of the plans for tomorrow. The medical team want Mandy to begin giving Bic her blood thinner shots to her belly. Mandy has practiced on an orange and managed to do it without the orange screaming too loudly. Even so, Bic is concerned that it won't be the same as when the nurses do it.

This evening, Bic was troubled by a pain in her belly. She thought that it might have something to with wanting to go to the bathroom, but she didn't feel up to walking there. Instead, she got into a chair that we slid into the bathroom and back. The trip was unsuccessful, but a good exercise!

Overall, today hasn't been the most spectacular - good or bad, but it is Easter Sunday, so we think she deserved a day off! Bic's demeanor has been up and down all day, but there have been no extremes!

This evening, Bic was interested to hear stories about how she was when she first came into hospital and how things developed over the following days. Some things she remembered, such as getting frustrated about not being understood and writing the word "pillow" to indicate she wanted a pillow moving. Most of what happened though, she had no memory of. Probably for the best!

Love Mandy