Becca's Wish Trip........Update: I think that I am going to started our Trip report! [Archive] - Page 3 - The DIS Discussion Forums

teresajoy

02-12-2009, 09:07 PM

BECCA UPDATE
I just got this from David

Day 7- Sedation

This morning, Bic was about as restless and agitated as we had seen her. It looked like we were in for a long day fighting with oxygen masks and everything else she is hooked up to. The nurse pleaded with the doctors to re-evaluate her meds and they decided to try a sedative instead (Ativan).

Bic went off to sleep like a baby. The nursing staff used the quiet time to give Bic a wash down, change the sheets and generally get things back ship-shape.

Later on about3 hours into her first dose, she came round agitated again.

Just to add insult to injury, our home lost power at around midnight last night when powerful storms and winds passed through. Seems a transformer was knocked out. At least it isn't cold enought for the pipes to freeze (yet). The repair was made after about 12 hours.

Neuro came to look at her head dressing and since it isn't actively bleeding, they prefered to leave it alone.

It suddenly struck me that Bic has stopped doing something that really went through us - grinding her teeth. It must have been two days ago that she stopped. That had started early on with her 'episodes' and was almost as bad as fingernails down a chalk board!

Besides squeezing hands and wiggling toes to some requests, there has been no contact with her. We are still unsure if she is aware we are close by and talking to her.

There was a first tonight in that Bic yawned a couple times. Probably not significant, but every little detail seems like a milestone to us. I guess we are looking for any small sign that she is on her way to the way she was.

The head drain is still steady and pink. No sign of motor oil yet!

So it seems the sedatives were what was needed, at least for a few days, to give her body (head) time to get better.

--------------------------
David

MAGICFOR2

02-12-2009, 10:46 PM

Thanks Teresa.

teresajoy

02-12-2009, 11:13 PM

Like everyone else, I am praying that this much needed rest will work wonders and Becca will be back with that beautiful smile soon!

Shanka

02-13-2009, 08:23 AM

That is a great update! My daughter wen through a time of grinding her teeth in the ICU and they said it was a sign of neuro problems like seizures. (well it was in our case) So, hearing that the grinding has stopped is wonderful. Also, the fact that she has yawned a few times is AWESOME news. Yawning brings more oxygen into the lungs naturally. I think this is just amazing news. I hope she sleeps well and her body is able to heal. My Asia was given ativan for the same reasons and it really worked. After sedation for 5 or so days she woke up with far less challenges. I am just so happy to hear this news!

maroo

02-13-2009, 08:42 AM

Teresa! Thank you for the update!!!

Mandy, David and Becca...we are continuing to pray for you guys!!!!

That is a great update! My daughter wen through a time of grinding her teeth in the ICU and they said it was a sign of neuro problems like seizures. (well it was in our case) So, hearing that the grinding has stopped is wonderful. Also, the fact that she has yawned a few times is AWESOME news. Yawning brings more oxygen into the lungs naturally. I think this is just amazing news. I hope she sleeps well and her body is able to heal. My Asia was given ativan for the same reasons and it really worked. After sedation for 5 or so days she woke up with far less challenges. I am just so happy to hear this news!

Thank you SOOOO much for this perspective on this news!! Do you mind PM'g Mandy and telling her all of this...I assume she is reading all of these comments, but she probably has questions for you...as you seem to be well versed in all of this!!!

This is great news, I agree! Your perspective is great news!

Thank you so much for posting this. It is very helpful for those of us that are praying to know how to pray! :)

Is your Asia doing well now? I hope so!!!! Blessings to you, too!!

teresajoy

02-13-2009, 08:56 AM

3princesses+aprince

02-13-2009, 09:08 AM

Aww, so glad to hear that Becca is resting. I was just coming in to see how she was doing today.

We just mailed out a card, I want Becca to know how many people were praying for her, and thinking about her everyday.

Shanka

02-13-2009, 02:22 PM

Teresa! Thank you for the update!!!

Mandy, David and Becca...we are continuing to pray for you guys!!!!

Thank you SOOOO much for this perspective on this news!! Do you mind PM'g Mandy and telling her all of this...I assume she is reading all of these comments, but she probably has questions for you...as you seem to be well versed in all of this!!!

This is great news, I agree! Your perspective is great news!

Thank you so much for posting this. It is very helpful for those of us that are praying to know how to pray! :)

Is your Asia doing well now? I hope so!!!! Blessings to you, too!!

I am so glad that my perspective on this has been encouraging to all of you. Let's put it this way... Asia was dying. She was in seizures 24 hours a day and they were caused by a metabolic seizure disorder called Pyridoxine Dependency. She was a baby, so not as strong as Becca is at 12. Well, her brain was very swollen so they decided that if they sedate her it could help her brain heal and give her body a break from the seizures. They told us at the time that it was our last hope and that they didn't expect it to work. Well, Asia turns 12 on March 2nd. She is such a shining star! Actually, Becca met her at GKTW when we were there. It's Asia's dog that Becca kept asking to pet. Anyway, after 5 days being sedated they did another CT scan and things looked better. She woke up on the 6th day and the seizures were much better. Today she still has her challenges but she is doing so well. She walks, runs, and never stop talking. LOL Doctors are still in shock because she made it through. I totally remember the signs when I knew things would be ok. Blinking, yawning, anything "normal" showed the beginning of recovery for her. Becca will probably start doing other things like scratching an itch... that's the next step... that's when you know she is aware. I know that will happen...I just know it. Becca is a strong girl just like my Asia and I am so happy that they actually met each other.

autumnpalm

02-13-2009, 03:08 PM

More prayers for your brave, beautiful daughter.:lovestruc

eyor44

02-13-2009, 03:51 PM

How wonderful that she is resting. and yawning...that is a good sign.

maroo

02-13-2009, 04:20 PM

I am so glad that my perspective on this has been encouraging to all of you. Let's put it this way... Asia was dying. She was in seizures 24 hours a day and they were caused by a metabolic seizure disorder called Pyridoxine Dependency. She was a baby, so not as strong as Becca is at 12. Well, her brain was very swollen so they decided that if they sedate her it could help her brain heal and give her body a break from the seizures. They told us at the time that it was our last hope and that they didn't expect it to work. Well, Asia turns 12 on March 2nd. She is such a shining star! Actually, Becca met her at GKTW when we were there. It's Asia's dog that Becca kept asking to pet. Anyway, after 5 days being sedated they did another CT scan and things looked better. She woke up on the 6th day and the seizures were much better. Today she still has her challenges but she is doing so well. She walks, runs, and never stop talking. LOL Doctors are still in shock because she made it through. I totally remember the signs when I knew things would be ok. Blinking, yawning, anything "normal" showed the beginning of recovery for her. Becca will probably start doing other things like scratching an itch... that's the next step... that's when you know she is aware. I know that will happen...I just know it. Becca is a strong girl just like my Asia and I am so happy that they actually met each other.

Wow!! What an awe inspiring story! Kids are resilient, aren't they!!

How cool that they met!!!

I can't wait to see your TR! PM me (or post on the Wish Trippers Thread) when you start it so that I can post a link on our Wish Trippers thread! :)

tinytreasures

02-13-2009, 09:06 PM

more prayers coming your way :grouphug:

Shanka thanks for sharing your story
I can't wait to read your trip report

teresajoy

02-13-2009, 09:27 PM

BECCA UPDATE
From David:

Day 8- Relaxed

The neuro surgeon saw Bic first thing and was happy with her progression. He noted that she was getting stronger on her left side and decided that they would leave things as they are through the weekend. The sedatives have really knocked Bic out and she is sleeping like a baby through most of the day with little agetation.

Plans for a CT today were put back to next Monday, when they will evaluate if the mass is shrinking and the area of stess has reduced.

Bic received a massage today lasting 30 minutes. She appeared to enjoy this with hardly any change in her oxygen sats. She even had some physical therapy.

The nurse reported that she had a 'converation' with Bic at one point when she was awake. She asked questions and got head shakes and nods in reply. The nurse was so excited at the progress and couldn't wait to tell Mandy the news. Sadly, we were unable to get her to repeat this for us. I think there are only a few times during the day that the conditions are right. It is some time when her sedatives are wearing off providing she is in the mood.

This morning, she was almost going all the way to the time that she could have more sedatives (4 hours), but by this afternoon, she was going over 11 hours. Her dose has been cut from the initial 2 ml (?) To. 1.5.

Another highlight for the day is that her nasal canula was turned off and her oxygen mask has been cut from 100 to 50 percent oxygen. Her oxygens have kept where we want them, mainly in the 70's and sometimes in the 80's. She has only desaturated a couple of times today and then only down into the 60's, so she is doing well on the medicines she is now getting.

The drain fluids are still pink and steady, so no issues there.

I think we are in for a nice quiet weekend, which is good all round. On Monday, they will be thinking about getting her out of PICU onto a regular neuro ward. The key there will be stability, particularly on the oxygen/agitation front.

--------------------------
David

teresajoy

02-13-2009, 09:29 PM

I think this last update sounds so encouraging!!! :banana: :banana: :banana: I wish Mandy could have seen Becca's conversation!

coteau_chick

02-13-2009, 09:40 PM

I was really praying hard for good news today. Thank you for that wonderful update. I will pray that it will just keep on getting better and better. My mom is praying for her too. God bless you and your family.

autumnpalm

02-13-2009, 09:43 PM

Oh I am so happy to hear this update. I hope Becca continues to recover quickly! What a fighter she is. Praying that she is out of the PICU as soon as possible.

teresajoy

02-13-2009, 09:48 PM

I Becca will probably start doing other things like scratching an itch... that's the next step... that's when you know she is aware. I know that will happen...I just know it. Becca is a strong girl just like my Asia and I am so happy that they actually met each other.

What an amazing story, thank you so much for sharing that with us. :hug:

jmskinner

02-14-2009, 06:38 AM

Thank you for the update. It's good to hear she is improving. My prayers are still with your family.:grouphug:

revrob

02-14-2009, 07:36 AM

I'm so glad to hear of this progress! You can do it, Becca! Still praying for you all!

jenb1023

02-14-2009, 09:58 AM

I am so happy to hear that Becca seems to be improving! We will continue to send good thoughts and prayers your way!

CampbellScot

02-14-2009, 10:40 AM

I'm thrilled to hear that Becca is improving!! I got goosebumps reading the last update!! Everyone is praying so hard for her and all of you.

Go BECCA!!!:cheer2: YOU CAN DO IT!!!:cheer2:

maroo

02-14-2009, 10:47 AM

BECCA UPDATE
From David:

Day 8- Relaxed

Bic received a massage today lasting 30 minutes. She appeared to enjoy this with hardly any change in her oxygen sats. She even had some physical therapy.

The nurse reported that she had a 'conversation' with Bic at one point when she was awake. She asked questions and got head shakes and nods in reply. The nurse was so excited at the progress and couldn't wait to tell Mandy the news.

This morning, she was almost going all the way to the time that she could have more sedatives (4 hours), but by this afternoon, she was going over 11 hours. Her dose has been cut from the initial 2 ml (?) To. 1.5.

Another highlight for the day is that her nasal canula was turned off and her oxygen mask has been cut from 100 to 50 percent oxygen. Her oxygens have kept where we want them, mainly in the 70's and sometimes in the 80's. She has only desaturated a couple of times today and then only down into the 60's, so she is doing well on the medicines she is now getting.

Thank you SOOOOO much for the update. Happy tears this morning! Sounds like the old Becca is on her way back! :woohoo: :woohoo: :woohoo:

:banana: :banana: :banana:

I don't know what I am most excited about...the O2 sats I have been praying for for days...or the conversation she had with the nurse...or that her left side is responding?!

I am so excited!

Thank you for the awesome news!

Tnkrbelle565

02-14-2009, 10:58 AM

Wonderful news this morning...it gave me goosebumps!!!

MAGICFOR2

02-14-2009, 03:27 PM

Praise God! So many good things happening for Becca! I know He is answering our prayers, and expect to see steady progress for her.:grouphug:

tinytreasures

02-14-2009, 06:22 PM

Thank you SOOOOO much for the update. Happy tears this morning! Sounds like the old Becca is on her way back! :woohoo: :woohoo: :woohoo:

:banana: :banana: :banana:

I don't know what I am most excited about...the O2 sats I have been praying for for days...or the conversation she had with the nurse...or that her left side is responding?!

I am so excited!

Thank you for the awesome news!

Crying happy tears here :lovestruc
keep it up Becca

Shanka

02-14-2009, 07:20 PM

Wonderful news! I am so happy to hear this!

jessica52877

02-14-2009, 07:27 PM

I am so glad to see some improvement! I have been following right along and praying!

teresajoy

02-14-2009, 08:55 PM

BECCA UPDATE

Day 9- Cry

Today has been fairly quiet. Bic (Becca) has been stable, despite not having her sedative all day since her last dose yesterday at 11pm. That's not to say that she has been happy, because she hasn't.

The pain killer has been giving Bic about 2 hours of rest and for the remaining 2 hours, she has been agitated. Her oxygen sats have stayed mainly good thoughout and they have even removed the nasal canular, leaving here with a tent mask on 50 percent oxygen. During her restless moments, her head has been to and froe and she had been pulling the mask from her face.

This evening, the nurse finally gave in and let Bic have 1.5 mg of sedative. That knocked her out within minutes probably for the whole night.

During the day, the nurse decided to. Clean Bic's mouth and brush her teeth. It was then that she gave out a big cry because she wasn't happy. Another nurse came running in thinking there was a problem as she has not been so vocal since she came to PICU.

Bic is now looking at us and has been for a few days, but there is no expression of recognition. When we talk to her she often turns away as if to say she isn't interested unless we can do something to make things better right now.

Physical therapy were round this morning and Bic was okay with that - she didn't put up a struggle.

We are expecting more of the same tomorrow and the way things are going, she should be moving to a regular ward on Monday.

Today has been fairly quiet. Bic has been stable, despite not having her sedative all day since her last dose yesterday at 11pm. That's not to say that she has been happy, because she hasn't.

The pain killer has been giving Bic about 2 hours of rest and for the remaining 2 hours, she has been agitated. Her oxygen sats have stayed mainly good thoughout and they have even removed the nasal canular, leaving here with a tent mask on 50 percent oxygen. During her restless moments, her head has been to and froe and she had been pulling the mask from her face.

This evening, the nurse finally gave in and let Bic have 1.5 mg of sedative. That knocked her out within minutes probably for the whole night.

During the day, the nurse decided to. Clean Bic's mouth and brush her teeth. It was then that she gave out a big cry because she wasn't happy. Another nurse came running in thinking there was a problem as she has not been so vocal since she came to PICU.

Bic is now looking at us and has been for a few days, but there is no expression of recognition. When we talk to her she often turns away as if to say she isn't interested unless we can do something to make things better right now.

Physical therapy were round this morning and Bic was okay with that - she didn't put up a struggle.

We are expecting more of the same tomorrow and the way things are going, she should be moving to a regular ward on Monday.

One final word, I think she is constipated again and I'm sure that is contributing to her restlessness when she comes round from her drug induced sleeps.

--------------------------
David

teresajoy

02-14-2009, 08:56 PM

Continuing our prayers. I hope they can make Becca more comfortable :hug:

mom2lilnick

02-14-2009, 10:01 PM

Hugs.. I have been praying for Becca. Nick has been ill so not posting a whole lot, but Becca is still close to our hearts and thoughts.

maroo

02-15-2009, 07:45 AM

Aw... Poor Becca! Now I gotta start praying those nurses will give her what it takes to make that sweet baby comfortable! And this has to be awful for Mandy and David!

We are still praying for you guys!! Hang in there!

feedthebirds

02-15-2009, 08:01 AM

Prayers being said. Hoping she will be able to get comfortable.

3princesses+aprince

02-15-2009, 08:41 AM

Glad to see things are getting a little better! I was so glad to hear.

tinytreasures

02-15-2009, 08:54 AM

prayers

kimmylaj

02-15-2009, 01:32 PM

more prayers

MAGICFOR2

02-15-2009, 01:42 PM

CampbellScot

02-15-2009, 02:32 PM

poor becca...i'm not understanding why on earth the nurses would withhold something that makes her comfortable...*sigh* I understand on the medical level but it seems rather mean on an emotional level! poor baby.

lots of prayers to darling becca!!!!:hug:

teresajoy

02-15-2009, 08:48 PM

BECCA UPDATE

Day 10- Tears

We saw the neuro surgeon this morning and asked him for his ideas on time from this point on. He said that he was pleased with Bic's progress so far and that he expected her to be moved to a ward in the next week or two. Once on the ward, he thought that they would be able to begin rehabilitation in another week or two and that this would take another four to six weeks, so his best guess for going home would be about eight weeks from now. Gulp!

When asked about what would drive a change in Bic's condition, the surgeon said that he thought when her drain fluid changed to tea color, that would coincide with her being noticably better.

A neuro specialist had to be called in from home to make a repair on the brain drain. It required all the tubing being replaced except the piece that goes in through her skull. A shut off valve had broken off! Must have been one of those Chinese alternatives.

Bic had an early morning sedative because she was very restless again. It knocked her out as normal, but she was restless again mid afternoon. This turned out to be poop again burning her skin. She was so upset crying, but today there were tears streaming down her cheeks.

We got some nods and shakes of her head today and even some pointing to where she was uncomfortable. We rented the Spirit video for her this afternoon and gave us the first evidence that she was able to see anything. She was unable to watch the whole movie as she kept closing her eyes.

On another occation, we told her that she had a new cuddly toy gift and she actually reached out for it.

All this might seem very trivial, but they are all major milestones in her recovery. We have still to see a smile or hear her voice and I think it is probably round the corner. Bic isn't at all happy and we suspect she is beginning to hurt being laid down for so long, hates having her privacy breached and probably distraught at still being in the hospital.

All in all, Bic had a good day. Her sats stayed good for the most part, had quite a bit of discomfort, but had a lot of waking time and was able and willing to communicate a little.

The CT is planned for tomorrow, so we will be going on an outing. It is Presidents day tomorrow, so I will be here with Bic for an extended weekend. The neuro surgeon didn't expect the mass in her brain to be significantly smaller, but did expect it to be less dense due to the migration of blood from that area.

I wonder what my updates will read on day 60?

--------------------------
David

teresajoy

02-15-2009, 08:49 PM

I was so happy to read that there are signs of Becca coming around! Reaching for a toy, watching a movie. I pray she can be kept comfortable and continue to improve.

maroo

02-15-2009, 09:16 PM

I am honestly glad to hear you say that she is not going to the ward tomorrow. I was getting a little concerned about how fast that was.

I can't imagine 6 weeks. I know those will be 6 very long weeks.

But I am SOOOOO glad that Becca is feeling better!! :)

What is her favorite character? From Disney? That can send her a note? :thumbsup2

eyor44

02-15-2009, 09:47 PM

Still praying. I think a lot of these things are good things.
Mandy and David, thank you so much for the updates.

Theresa, thank you for playing go between.

CampbellScot

02-15-2009, 10:18 PM

Thank the good Lord!!! I am so pleased that Becca is coming around little by little. I can only imagine how totally uncomfortable she must be. Poor darling.

TeresaJoy--love you BIG for being so great about updating everyone. :hug:

Today, in the middle of Mass, Father Mike looked at me and said "And how is our dear little friend doing today?" :) He asked for special prayers for Becca from the entire congregation. I've asked for prayer for Becca so often in the last few weeks and have lit so many candles for my DisBoard friends. It's funny how we get so attached to these people that most of us haven't met...but come to love and think of often.

anyhow...waxing poetic here...:rolleyes: :lmao:

continued prayers to sweet Becca and her mother and father.

:goodvibes

Baloo

02-15-2009, 10:44 PM

Dear Lord, I pray that Becca will have a comfortable day today. I ask that you will bring peace to her parents and wisdom to the doctors and staff who are caring for her. Lord, thank you for your love for this family. Help them to feel your love. We pray that you will touch Becca with healing and relieve the pain. In the name of Jesus Christ, Amen.Amen

Mandy,

I just came across your TR tonight and was so enjoying it...the Big Give....all the wonderful pictures of Becca.I especially like the ones of her twirling in the poofy skirt.

I am so very sorry you and your family are going though this.

Becca will be in my prayers that soon you will see that wonderful smile again.

God Bless all of you.:hug:

teresajoy

02-15-2009, 11:48 PM

I'm just happy that I have something to do to feel like I'm helping a little. David is really great about sending those updates out everyday! I check at 10PM everynight and there it is! :thumbsup2

Megan76

02-16-2009, 12:17 AM

i will be sure to keep the two of you and becca in my prayers. stay strong and positive!!

The Moonk's Mom

02-16-2009, 06:56 AM

Continuing to pray for all of you!:hug: So glad to hear about the improvements and hope for more today!

maroo

02-16-2009, 07:28 AM

Still praying for you guys!

How is Mandy? Does anyone know?

I am praying for a good day today!

Go Becca, Go!!

Tnkrbelle565

02-16-2009, 08:18 AM

More prayers heading your way :grouphug:

MAGICFOR2

02-16-2009, 03:40 PM

My DDIL wants to know if Becca has a Caring Bridge? www.caringbridge.org (http://www.caringbridge.org) or www.carepages.com (http://www.carepages.org)

tinytreasures

02-16-2009, 04:48 PM

I am glad to hear of each small step forward
prayers

maroo

02-16-2009, 04:54 PM

My DDIL wants to know if Becca has a Caring Bridge? www.caringbridge.org (http://www.caringbridge.org) or www.carepages.com (http://www.carepages.org)

I really do not think she does. But someone please correct me if I am wrong. :)

teresajoy

02-16-2009, 05:01 PM

I really do not think she does. But someone please correct me if I am wrong. :)

Woops, I was thinking she had a Caringbridge page, but it was their family website I was thinking of! So, no, as far as I know they don't have a Caringbridge page.

maroo

02-16-2009, 05:04 PM

She has one, but I don't think they are updating it. I will check on it.

thank you!

I should have just asked you to begin with!! :) :rotfl2:

TwistofLemon

02-16-2009, 05:19 PM

Just stopping in to say Becca continues to be in my prayers.

And, renewed prayers for Mum and Dad. I think it's often worse for the people watching the suffering, the ones who feel so helpless.

teresajoy

02-16-2009, 09:29 PM

BECCA UPDATE

Day 11-Move

The day began with Bic being about as good as she been during her stay in hospital. Her oxygen sats were holding in the high 70's or better and she was not really getting very agitated. Her last Ativan was at 2 am. We were a bit perplexed, however, that her blow by oxgen supply had been taped to her mask when we arrived. It is meant to be used to suppliment her oxygens when she needs it. Someone obviously wanted a quiet life.

Later on in the morning Bic went for a travel to have a CT scan. That went without incident, except we could hear Bic crying during the scan. We think she gets afraid when anything out of the ordinary happens.

Later on we got the results of the CT. Her abscess has shrunk from 4.3 cm to 3.8 cm, there is less contrast showing the amount of blood has further reduced and they were unable to detect any blood in the ventrical. All this is very good news.

We were also notified that they had decided to move Bic to the neuro ward. That happened at about 5.30 this evening.

We were taken aback when we got to the ward. The main thourofare was cluttered with beds, medical equipment and other junk. It is a dump. The room is tiny and we fall over oneanother and everything as we move around in there. It should be an embarassment to the hospital. The monitor that keeps an eye on Bic's vitals is turned towards the door such that we can't see it from the visitors chair. We could here the alarm going off almost continuously, but nobody came to investigate. I'm not sure it is monitored remotely at the nurses station, but if it is, the system doesn't work. The other thing that bothered us was that the staff on the neuro ward appeared poorly briefed on Bic's issues. They bumbled around in a disorganized fashion lacking the confidence that you expect.

Before we were assigned a room, the PICU staff said that we could either be going to the old neuro floor when they have small rooms or the new neuro floor where the rooms are larger. I'm not sure if there will be any differences in the level of medical attention, but we are going to make an issue of what we have experienced so far and press for a floor change.

Honestly, where she is now is like where you put people to forget about.

From being quite content, Bic was very upset in her new surroundings. I don't know if it was the change of scenery, but she would not stop crying until she had her painkiller.

One other gripe that we should have picked up on earlier. The bed that she is in (and has been in for the last 11 days) has a horrible dip in it that is making it difficult for Bic to get comfortable in. If she stays in it for the next two months, she is going to need more than physical therapy to get her back to rights!

Tomorrow I am going to have to address these issues with the doctors and get them rectified. We are extremely unhappy with the situation we now have and are concerned that Bic is now very vunerable to the medical staff themselves as well as her medical condition.

Its late but I can't rest until I have gone to have a surprise check up on them. I'm going to go across to the hospital to make sure Bic is still okay.

--------------------------
David

teresajoy

02-16-2009, 09:35 PM

I'm glad that it sounds like things are going well for Becca's healing. But, the hospital sounds like they need a talking to! I am REALLY not happy about the conditions that are going on there at the hospital. I hope everything gets straightened out very soon.

:hug:

eyor44

02-16-2009, 09:48 PM

Good news from the CT scan! :cool1:

The hospital though, oh my goodness. Those conditions could set back what progress she has made. Prayers that David and Mandy are able to set things right.

HeatherSue

02-16-2009, 10:33 PM

Wow, I can't believe the hospital would put a child into such horrible conditions! I sure hope they get that worked out.

I'm so glad the CT scan looked better today.

FSUDisneyGirl

02-16-2009, 10:54 PM

prayers that you are able to get this worked out!

and that the doctor listens to your problems and requests..

and everything is changed to make the best possible situation for your little girl!!!

MAGICFOR2

02-16-2009, 11:22 PM

prayers that you are able to get this worked out!

and that the doctor listens to your problems and requests..

and everything is changed to make the best possible situation for your little girl!!!

Amen. That sounds deplorable!

Thanks, Teresa for the info.

jenb1023

02-17-2009, 07:09 AM

Glad to hear the CT scan showed improvement! But the description of the new ward is terrible! Complain and stay on them until changes are made - you know what they say the squeaky wheel gets the oil.

maroo

02-17-2009, 08:08 AM

CT results!!!

Woo Hoo!!!

That is AWESOME news!!

:banana: :banana: :banana:

Move to a ward is good news, too!

But...they need to get a grip on that stuff! Hopefully they get you moved to the new floor today.

I am so thankful that she has awesome parents to fight for her like you guys are! :)

Tnkrbelle565

02-17-2009, 09:50 AM

Wow. That's terrible news about the hospital treatment. Hoping that it improves after they receive a talking to!

kimmylaj

02-17-2009, 10:09 AM

good news about her healing, i hope you can get all this room situation straightened out

CampbellScot

02-17-2009, 01:43 PM

I'm so glad that Becca is improving, but those conditions are unacceptable! Please DO make a fuss. Perhaps the staff is unaware of the depth of inappropriateness. Someone needs to point it out!

Go for it Becca's Dad! Be her lion! It will not only help Becca but other children as well!!

Continued prayers for you all!! And a special prayer for a room change and compassion from the hospital staff!

3princesses+aprince

02-17-2009, 01:52 PM

So glad to hear about the good news on the CT scan. BUT.. make a fuss, make them get her comfortable. I can't imagine sleeping with a dip in my mattress at night, never mind having to lay on it all day.

The Moonk's Mom

02-17-2009, 02:03 PM

Great news on the CT!!!!:banana: :banana: :banana:

I hope all gets straight with her room and care...:hug:

tinytreasures

02-17-2009, 08:43 PM

great news about the CT scan
I would really make a fuss about where she is now
as for a new bed also :hug:

teresajoy

02-17-2009, 08:55 PM

BECCA UPDATE

Day 12-MRI

I did pay the hospital a late visit last night. Bic was been attended to by a nurse. She was wide awake and sweating. The nurse explained that she had tried to improve the comfort of the bed by using box foam and Bic had needed a stick for blood. She was not a happy camper because of the disturbance. She did settle down, though and appeared very pleased that I was there. Soon she fell asleep and I returned to my bed.

This morning Bic was sleeping when we arrived. She had just had her oxicoden and was zonked. Later when she came round, she was very agitated and found it difficult to tell us what the problem was. Eventually she confirmed that it was the tops of her legs that hurt. We tried to get her more comfortable in bed, but that is a lost cause.

We talked to the nurse about the problem with the bed and they suggestested that a 'sports bed' might be appropriate. She told us that one would be organized for Bic.

Bic had a massage this morning as well as physical therapy. She loved the massage again, crying when she left. The PT was less fun for her. She cryed when she was there. She had a lot of difficulty straightening her leg out. We talked about ways to overcome this, but also concluded a better bed was necessary.

We received word that they wanted to do an MRI around lunch time, so we asked to have someone explain why given that they had done a CT only yesterday. The Resident Practicianer said that they were unable to explain why certain things hadn't come back. Where the CT scan is today, they would have expected her to be talking. They don't understand why she isn't and decided they needed the detail that an MRI could give.

We went with Bic to the MRI. It was quite a performance getting her ready for the scan with all the precautions they have to take. There was a concern that she wouldn't hold still for long enough to complete the test. We were conslulted on what we thought would work best. We suggested that if she has Oxicoden, she would be relaxed for long enough to do the scan, but to be aware that it is painful for her tostretch her legs out. The MRI would have been a complete success except that the doctors changed the order mid way though the scan to a more comprehensive evaluation, which added another 20 minutes to the 45 minute scan. After staying completely still for 45 minutes, she began to get stressed and agitated. I was there at the tunnel watching her the entire time and had to give the signal to abort when she became upset. They pulled her out of the MRI and removed the restraints so that she could get cofortable again. She was unhappy with everyone. The nurse that came down with us from neuro began trying to organize extra oxicodon. The burocracy involved meant that this took over half an hour to get there. Finally she received the adhock dose and we were ready to get started again. After the restart she managed to go the course. We finally got out of MRI nearly 3 hours after arriving there. Apparently they had to cancel several MRI appointments on account of us!

We took a late lunch and on our return to the ward, Bic was waiting for us with her oxygen mask off. We questioned her about what she was doing without and she put her finger up to her mouth in a 'be quiet' motion. We think she didn't want us to tell the nursing staff. Then she beconned us to her with her finger to tell us that her legs were hurting. We massaged her legs for a while, which I think she liked, before she told us she had enough by brushing us away.

The pain speciallists came round late in the afternoon and we discussed Bic's leg pains. They suggested that we try valium for muscle pain between the oxicoden medicine. We have tried that for a while and thin that maybe it is too early to tell if it is making any difference.

Early this evening, we got to see the neuro surgeon on his rounds. He discussed Bic and the MRI. The MRI detected blood in the ventricle, which is supported by the brain drain fluid, which is still pink. He confirmed that he was perplexted that Bic's speach hasn't returned. He was using the MRI to detect other possible issues such as blood flow problems. He was unable to find anytjing suspicious, except for som abnormal blood flow resulting from the pressure still being exerted by the abscess . He is looking at having a PICC line put in, which is a long term IV put in a major vein in the arm. This will be for the antibiotics that will have to be administered for months to come.

The surgeon also wanted to get speach therapy and occupational therapy hooked up with Bic (in fact they had been today, whilst we at MRI).

The sureon spoke of removing the drain when the fluid changes color. They would first set it so that it won't allow any drainage and assess what happens, probably by CT. If fluid continues to build up, they will have to put in a permenant drain, but if it doesn't, that will show the brain is reabsorbing the fluid naturaly.

Today the staff in neuro redeemed themselves. They were very attentive and used the day to understand Bic's unique medical symptoms and issues. We think the ward is still a dump, but the nurses are good and it really isn't dirty.

The bed arrived late this evening and the staff on the ward plan to move Bic into it at an opportune time before the morning. .

This afternoon, Bic was a handful after returning from the MRI. She wouldn't lay still, her legs obviously causing her discomfort. She got into just about every position imaginable and kept ripping off the oxygen mask. It was nice to see her so active, but she wore us out! Besides this, she kept demanding a leg massage and then would take our hands and pull them away because she had had enough. It was a bit like stroking a cat!

All the movement is a good thing because she is beginning to make her body work again, so we are not about to discourage it. We are concerned though that in a fit of frustration, she will rip the drain out of her head and that would be bad!

--------------------------
David

teresajoy

02-17-2009, 08:57 PM

I'm glad to hear that Becca is communicating now. I'm sorry she is so uncomfortable though. I hope they get her into her new bed and it helps out.

CampbellScot

02-17-2009, 09:10 PM

I'm thrilled that Becca is communicating again!! Of course she is uncomfortable, poor thing. She's being feisty and that is always a good sign. It's a normal sign for anyone sleeping in a horribly uncomfortable bed and having to needles poked into her and tubes in and out. All good signs.

I wish she was more comfortable though.

Will continue to pray for you all!!!

go becca!!!!:hug:

kimmylaj

02-17-2009, 09:26 PM

still praying for sweet becca

MAGICFOR2

02-17-2009, 11:17 PM

I think it's great that Becca is communicating and showing that she has an opinion about what is going on - I hope the staff can make her more comfortable, and she'll continue to improve.

Tink rules

02-18-2009, 02:25 AM

Sounds like she's fighting (in a good way... ) and that's a good sign!!! :thumbsup2

Tnkrbelle565

02-18-2009, 06:19 AM

She is a little fighter...that sick and getting feisty...must be a good sign :thumbsup2

The Moonk's Mom

02-18-2009, 06:36 AM

Go Becca!

So glad to hear you are getting a little better care!

Hope everything continues to improve!

Still praying!:goodvibes

maroo

02-18-2009, 08:03 AM

Still praying for Becca here.

She has really been on my heart for the last day. I am glad she is ok after her MRI. Sounds like a crazy day for you guys.

I am continuing to pray for you guys!!!! :)

mom2lilnick

02-18-2009, 08:53 AM

Praying.

gcast1

02-18-2009, 10:01 AM

Continued prayers here and big hugs for everyone!:grouphug:

tinytreasures

02-18-2009, 12:19 PM

wow a 3 hour MRI that had to be so hard to watch
I am so glad she is getting her point across to everyone
way to rally Becca :lovestruc

MapleGirl

02-18-2009, 12:24 PM

I've been reading this post from the beginning and I am so happy that Becca is communicating!! That's wonderful news.

Keep up the good work Becca!! :cheer2: :cheer2: :cheer2:

3princesses+aprince

02-18-2009, 12:30 PM

I'm so sorry you still have to watch her in pain. But the fact that she is communicating is GREAT! Good news.

Shannalee724

02-18-2009, 01:27 PM

I just can't thank you enough for sharing your life with us. I enjoy reading about Becca's fiestiness everyday. She is such a brave little fighter!!!

design_mom

02-18-2009, 02:02 PM

Continued prayers from Ohio for Becca and a smooth recovery.

eyor44

02-18-2009, 04:11 PM

What a busy day! Sounds like the nurses are getting on top of things now. Wonderful. Hopefully the new bed will work out. Prayers of thankfulness this evening also.

FSUDisneyGirl

02-18-2009, 06:09 PM

I check up on Becca every day! I'm so happy to hear that things are getting better in her unit! :thumbsup2

HeatherSue

02-18-2009, 06:22 PM

I'm still praying for Becca. I'm so glad that she is able to communicate with you now. But, I'm so sorry that she's in pain.

teresajoy

02-18-2009, 08:36 PM

I was just loggin in to post that I was going to bed and wouldn't be posting an update tonight and then an email from David popped into my inbox! So, here you go!

BECCA UPDATE

Day 12- Room with a view

Most days I forget to say something in my updates, but yesterday I missed an important item. The reason we can't go to the other ward with larger rooms is that it is for short term stays only. It is only staffed Monday to Friday. There are two larger rooms on our ward and one of those just became free tonight and thanks to the nurse that is taking care of Bic, we have got it. It overlooks Livingstone Park and the McDonnald house. It will make a difference to our state of mind!

This morning was none stop activity with specialists lining up at the door. Bic had occupational therapy, physical therapy, speach therapy, the pain doctors and neuro waiting on her. Our role was to communicate with each and make sure they were all working together.

The most insightful information came from the occupational therapist who believed the discomfort in Bic's legs were neorological in nature. We made sure they hooked up with the pain specialists. Later the pain team came round and announced that they recommended two neurological drugs this appears to be the greatest challenge. Bic is contiuously on the move, agitated and irritated by ber legs that just won't allow her to settle. The pain specialist said that massaging her leg confuses the brain by overloading it with stimulation effectively blocking the pain, which is why she likes it so much. The neuro drugs will block targeted receptors to reduce or eliminate the pain.

The speach therapist made a lot of headway communicating with Bic, but no talking yet. She said that she didn't think Bic was ready to eat or drink yet as she doesn't have enough control of her tongue.

One finding of the day was that Bic is getting stronger on the right, but appears to be getting weaker on the left. One specialist commented on another lesion on the right side of her brain that we have not had the opportunity to discuss with neuro yet.

The bed is much better suited to Bic. It even has a massage feature that has the same effect as stroking her legs.

Her nurse suggested removing one source of irritation by discontinuing with the oxygen mask. That was cleared by neuro and Bic is without oxygen and doing well on her sats.

The methadone was first given to Bic at about 4 pm, but besides immediately knocking her out, within only 15 minutes she was awakening with similar discomfort from her legs. By her cries, it is clearly bothering her a lot. Her arms wave continuously as a mark of distress. It seems to come in waves. We were told that it could be a while before she sees any neurological benefits from the new meds.

A PICC line was ordered today, but I guess because the radiology department was busy, this will be placed tomorrow (using xray to position the catheter).

We keep puting videos on for Bic in an attempt to gain her interest, but for the most part she hasn't shown too much interest.

Tonight there was another change that became very apparent - Bic's arms became very animated and restless. They waved about in the air and around her body, randomly grabbing things and pulling. The greatest concern overnight is if she grabs her feeding tube or worse, her brain drain, and pulls them out. We gave instruction to the nuse to use Ativan to try to keep her quiet and hopefully give her a good nights rest (she has hardly had any quality rest today). The alternative will be to restrain her hands and arms. This is something we don't want to do, but the consequences of an 'accident' are pretty bad.

Our take on what is happening is that as the size of the abscess is decreasing, different parts of the brain are getting stimulated. These stimulations are not necessarily controlled and the simptoms are pains and involuntary movements.

Maybe that is what is happening with her voice now. She is making horrible whining sounds - perhaps a precurser to speach? We hope.

The last two days have been exhausting for Bic, us and the nursing staff! It will be nice when (if) things calm down a little.

Special message for the DISboarders: Mandy is still alive! Since moving out of PICU, we are able to use phones and laptops, but simply have not had a moment to take advantage. Once Bic's restlesness issues settle down, Mandy will be with you once more!

--------------------------
David

teresajoy

02-18-2009, 08:40 PM

The new bed sounds great!! I hope the meds give Becca some much needed rest soon! It's been such a hard two weeks for her. :hug:

I'm looking forwardc to hering from Mandy soon!

Tnkrbelle565

02-18-2009, 08:42 PM

Ya for the massage bed. Hopefully that will mean that you guys will get a small break and let the bed do the work for you!

ndloewen

02-18-2009, 08:47 PM

SO, so thankful to hear improvements. Mandy, hang in there. Praying for rest for you all.

revrob

02-18-2009, 08:48 PM

One day at at a time! Still praying.

jessica52877

02-18-2009, 09:20 PM

Things are looking so much better from just a few days ago! Please take care of Becca, we'll be here once she is all better!

FSUDisneyGirl

02-18-2009, 09:33 PM

Hang in there...and take your time to get back to us! Becca's your priority...but thanks so much for the updates! :goodvibes

maroo

02-18-2009, 09:38 PM

Yeah...

I am so, so thankful that they found the source of her leg pain! That makes total sense!!!! :)

I do hope that she is getting more on the road to communicating with you guys.

I have been wondering how Mandy is doing. We are praying for all of you.

I will have something special for Becca when I get back from Disney. 2.5 days of my trip will be alone...so I have some missions to accomplish and one is to get some characters to sign a get well card for her to hang in her room. I have the list of her fav characters from The Big Give info we had before. I hope it brightens her day!!

And I have something for you guys, too!

We are still praying!!!!!!!

:) Maroo

CampbellScot

02-18-2009, 10:45 PM

prayers prayers and more prayers...

much love to you all.:hug:

TwistofLemon

02-19-2009, 12:59 AM

I'm so impressed with the way you are coordinating all the assorted treatments Becca is having! That is absolutely the best way to make sure things are being done right.
Your family continues to be in my thoughts.:grouphug:

Beka

02-19-2009, 06:09 AM

Gotta say, I *love* your DD's name ;)

Since she's at risk for blood clots, do they have her on a blood thinner? Just curious.

I'm so happy you all got a Wish! I know she'll have a blast, and I'm sure she'll make lots of friends!

twinmum

02-19-2009, 06:27 AM

It sounds like you and Mandy are doing a masterful job of working with the hospital team, coordinating all their efforts and advocating for Becca. It can't be easy, and I know that it's exhausting.

I pray that Becca's pain becomes more manageable, and that she continues to improve her communication with you.

May God give all of you strength.

Alison

jenb1023

02-19-2009, 06:54 AM

I am so glad to hear Becca got a new bed and room! Let's hope that the new meds and coordination of all her caregivers will help give her some relief from the pain and keep her on the road to recovery. Continuing to send good thoughts and prayers your way.

Teresa - thanks for posting the updates. :) I might not post every day but I check first thing every morning for an update on Becca's condition.

gcast1

02-19-2009, 07:00 AM

Continued prayers for strength for David and Mandy and healing for our precious girl!

kimmylaj

02-19-2009, 07:03 AM

i pray and hope that becca starts to feel a little better soon. i cant even begin to imagine how hard it is for you guys. you are all in my prayers

maroo

02-19-2009, 07:20 AM

We are still praying for you guys!!!

:)

I hope Becca has a much better day today! And each day gets better!! :)

msce2

02-19-2009, 08:06 AM

Great job on getting her the new bed, and the room with a view!:thumbsup2 :thumbsup2 I'm hoping to hear the new meds are working wonders and she is resting comfortably. She is such a fighter! Praying non-stop for a happy and healthy Becca!

Dreamer & Wisher

02-19-2009, 08:50 AM

It's so good to hear she is improving. More prayers coming your way. Hope she continues to improve and I hope you guys are keeping strong.

Disneylvr

02-19-2009, 09:43 AM

I just starting following this thread but I want you to know that Becca and your family are in my daily thoughts and prayers! Becca is a strong little girl and she will get through this. :hug:

feedthebirds

02-19-2009, 09:56 AM

Still praying for you all. Glad to hear about the bed and the room with a view. Hoping she gets some relief in her legs with the new meds.

tinytreasures

02-19-2009, 10:54 AM

yah for new bed and room
Prayers for the PICC Line

llurgy

02-19-2009, 01:45 PM

Hi All!
Mandy here.

I finally have 5 minutes to come online and write a message.

First of all......THANK YOU EVERYONE for all the cards and gifts you have showered on Becca, myself and David, you will never know just how much it means to us because we would never be able to find the words to express our gratitude. Thank you all so much.

The room, floor and ward..... first impressions aside, the new room is good but best of all our nurse is fantastic!! Her name is Robin and we couldnt ask for anyone better. The night staff are obviously not quite as good as they are spread very thinly but they do their best and are always there when Becca needs them.

Bic has been very tired today, I think that the new meds from yesterday are having their effect on her, she is no longer thrashing about like yesterday, she seems instead to be a little bit out of it and sleeping all of the time. The doctors are aware of it though and are keeping their fingers on the pulse so as to say and will fine tune her meds as needed. I am just glad that she is again getting the rest that she needs because again she has hardly had any proper rest since the day before yesterday.
She had a PICC line placed today. They did it early because all her IV sites are now failing and she has to have one anyway so we can administer antibiotics at home.They let me stay in intraventional radiology to watch the catheter go through to her heart, it was neat :)
I suppose I shouldnt say that, but it was :)

Therapy brought their therapy dog in today, had him put his front paws onto the bed so that Becca could stroke him :) They asked her if it was okay first and she gave a thumbs up, when he got his head within reach she was stroking him and fondling his ears, you could tell she really liked it. That was about the only thing she did today, no-one else could get anything else out of her, she just couldnt be bothered and ignored everyone :) :) The dogs name is Ainsley, a black lab/border collie cross and he is sweet.

Oh well, doesnt 10 minutes of freedom just fly by??? Mandy has to go back to the grindstone.......Just kidding, I wanna go get a cup of coffee whilst Bic is still in sleepy-byes land :)

Hopefully I will be able to get online more in the coming days, I have missed you all.

I havent written a full update here, there will be more when David sends his daily report but I am sure you wont mind some repeats :)

BTW.......Can you believe that David writes all of his updates on his little BlackBerry??? His thumbs just fly all over the keyboard.
:grouphug: :grouphug: :grouphug:
Love
Mandy

iu97alum

02-19-2009, 01:56 PM

Thanks for the info Mandy. We're all thinking about you and are so excited to get an update from David!! Have yout hought about a caringbridge site? Just a thought.

We can't wait to hear more good news about Becca's progress!! Hugs to you and David!

teresajoy

02-19-2009, 02:32 PM

Therapy brought their therapy dog in today, had him put his front paws onto the bed so that Becca could stroke him :) They asked her if it was okay first and she gave a thumbs up, when he got his head within reach she was stroking him and fondling his ears, you could tell she really liked it. That was about the only thing she did today, no-one else could get anything else out of her, she just couldnt be bothered and ignored everyone :) :) The dogs name is Ainsley, a black lab/border collie cross and he is sweet.

BTW.......Can you believe that David writes all of his updates on his little BlackBerry??? His thumbs just fly all over the keyboard.
:grouphug: :grouphug: :grouphug:
Love
Mandy

So cool about the dog!!! It must have been so nice to see Becca enjoying it so much!!!!

And, I have been VERY impressed with David's thumbtyping skills! I am always amazed when I get his updates!!!

It is SOOOO nice to hear from you! :hug:

jenb1023

02-19-2009, 02:43 PM

Hi Mandy!

It is great to hear from you! I am so glad to hear how well Becca responded to the dog therapy. It is amazing how much our furry friends can lift spirits. I am also very impressed with David's blackberry skills. As for the cards and gifts, I think we are all just thrilled to be able to do a tiny bit to help your precious family.

Still sending thoughts and prayers your way!
Jen

Dreamer & Wisher

02-19-2009, 02:51 PM

jham

02-19-2009, 03:02 PM

I love hearing about the dog! My nephew's dog is a trained therapy dog (she is a golden retriever) and I know it is a lot of work for their family, but it is nice to hear about a dog making a difference in someone's day. I can't believe David does all those updates on his blackberry! I can't even text without major trauma! I think about and pray for your family every day! When we were in Disneyworld last week I just kept thinking about Becca. :grouphug:

CampbellScot

02-19-2009, 03:22 PM

aren't therapy dogs the BEST?! I really do believe they make a big difference in recovery! If the doctors are letting therapy dogs in to see Becca, then they must be satisfied that she is firmly on the road to recovery! :cheer2:

Hugs and prayers to all y'all!!!

:goodvibes :goodvibes :goodvibes

MaryAz

02-19-2009, 05:08 PM

So good to hear from you Mandy. The therapy dog sounds wonderful. Glad the nurse is good-Becca deserves the best!

llurgy

02-19-2009, 05:55 PM

Since posting the message at 2.45pm Becca has been playing up.
Around 3.30pm she started to be really restless and running a bit of a temp. She was started on new meds yesterday evening and after a full day yesterday of holding her baseline sats at 72% she started to act up with her sats after being given the first dose of her new mad last night. She has been holding them today but lower than we would like but after 3.30pm i have been holding the blow by oxygen permenantly at her face just to keep her sats in the low 70's, take it away and she dips to the mid 50's. She will not tolerate the mask and struggles like you wouldnt believe when we try to put it on her, she will tolerate the blow by.....just.
The persons in charge of her meds think some of the properties may make her breath less deeply, they feel that it make take a few days for her body to equalise itself to the meds.
She has also started quivering?? It is weird, it looks as if the bed is on a slight vibrating mode and all her body is wobbling. The bed isnt vibrating, we checked.
They may have to restrain her tonight to administer oxygen as she needs it but will not tolerate the mask.
Will let you know what happens, she has been given some oxicodone and that makes heer sleep, that is on top of the Methadone she got about 2 hours ago and some Neurocotin.
We are turning our little girl into a real old druggie arent we?......Well whatever works now is what matters, we will deal with any drug issues when we are able to.

Love
Mandy

design_mom

02-19-2009, 06:43 PM

((Hugs, Mandy)) I am so sorry for all that you are going through. I hope that they can get Becca's meds worked out so she's comfortable and recuperating properly.

I also meant to ask if you are at Children's in Columbus? (I looked up Bysville and it looks like Columbus is the closest "big city.") We are just north of Columbus... so if you need anything, please let me know. If you PM me, I'd be happy to send you my phone number.

eyor44

02-19-2009, 07:44 PM

Hello Mandy, so nice to hear from you. Hang in there. We are all praying, but you know that. Two steps forward and one back is how it usually works. Hope they get her meds regulated soon. :grouphug: Prayers every day.

teresajoy

02-19-2009, 07:57 PM

I'm sorry things aren't going so well tonight Mandy! :hug: :hug: :hug: I hope things will improve overnight. We are praying for you guys.

FSUDisneyGirl

02-19-2009, 08:42 PM

I hope she gets used to the new meds soon, and can have a restful sleep tonight. :hug: I know you probably don't have much time, but thanks for letting us know how she (and you) are doing! :lovestruc

teresajoy

02-19-2009, 09:19 PM

Mandy covered most of this, but here is David's nightly update.

BECCA UPDATE

Day 14 - Falling Sats
This morning we found Bic with a new feeding tube. She had pulled it out during the night and they elected to replace the NJ with a NG tube to the stomach. Fortunately no harm done.

The neuro surgeon decided that the fluid from her brain was getting close to being ready to be capped off (so to speak). He raised the apparatus to give the equivalent intercranial pressure of 10 cm water. They would now be monitoring changes in flow plus any behavioral changes. Eventually, they will raise it to 20 cm water and if everything is working the way it should (no further build in pressure) and the brain is reabsorbing the fluid, they will remove the tube.

Bic tended to sleep more this morning with a bit of whining in between, but generally more relaxed. She had her massage this morning, but she wasn't interested. The speech therapist came with her dog. She stroked the dog and felt its ear. The therapist was not able to get much more from her than that.

Before mid day, Bic went down to have her PICC fitted. It was placed with on her arm and terminating above her heart. She had oxycodon before the procedure and that was enough to knock her out.

This afternoon, Bic was out for the count and was very unresponsive for physical therapy.

At about 3 pm, there was a change. She became much more agitated and her oxygen sats fell to very low levels. A mask was tried, but this only made things worse and her sats fell even lower. the only thing that would work was blow by oxygen, which meant continuously chasing her face.

Bic has also developed a tremble throughout her body. We are not sure if this is because of the neuro drugs or has something to do with her mind waking back up.

She doesn't want to communicate today at all. The best we get are whining moans. On the positive side, her legs seem to have settled and her arms are less active.

This afternoon, she was running a slight temperature of 100.6 and she almost stopped passing urine. I am pretty sure the catheter is bothering her, though when asked, she won't confirm that is true.

Tonight, she will probably have to sleep with a face mask on for oxygen and that means we will have to restrain her to make sure it stays there. That's really unfortunate, but it is going to be the only way to make it work.

We questioned the influence of the new drugs on this latest development and they confirmed that they would make breathing shallower, but as her body adjusted to them, it should go back to normal.

A dose of oxycodon this evening, the first since having the PICC, helped Bic have some restful sleep. She was sound asleep as we left for the night and hopefully will remain that way for a good while longer, because of the restraint threat!

The neuro team discussed the second abscess and said that they believed it would go away with the antibiotics without any additional treatment. They appologized for not mentioning it before, but thought they had already talked to us about it.

--------------------------
David

Applemomma

02-19-2009, 09:59 PM

It is now 12:36 am. I have read this thread in one sitting and fallen in love with this family.

I'm heading to bed, stopping to kiss my healthy, sleeping children. I'll say a prayer for them to continue to be healthy, a prayer for families who's children aren't and a prayer for children who have to go through things no child deserves. Tomorrow morning I'm going to not complain about all the small annoying things in my day but be grateful for them because it means everything is fine in my world and I'm grateful for that.

Mandy, David and Becca ...hang in there :hug:

Rebecuberduber

02-19-2009, 11:20 PM

I'm praying you through the night, tonight.

MAGICFOR2

02-20-2009, 12:18 AM

I am praying tonight, too.

jenb1023

02-20-2009, 04:56 AM

I am so sorry to hear that things didn't go well later in the day yesterday! I will keep sending prayers and good thoughts your way. Hopefully, the doctors are right and once Becca's body adjusts to all of the meds she will stabilize again.

Tnkrbelle565

02-20-2009, 06:44 AM

Sounds like more prayers are needed :hug:

maroo

02-20-2009, 06:52 AM

llurgy

02-20-2009, 06:57 AM

Just a quickie update to put everyones minds at rest.

We came in with a feeling of dread at 6.30am to see what had happened overnight and to check whether or not David would be able to go into work.
She was sleeping peacefully, her sats were good and she was not restrained!:goodvibes
We asked the staff what she had been like overnight and they said she had been pretty good, just a touch of restlessness at about 4.30am where her sats dropped a little, but once she calmed they went straight back up, so we were very happy as we walked across the hospital to send David off to work for the day.

I think David forgot to put in his update that her new room details are:
3 Tower South, Room #12

Love Mandy

jenb1023

02-20-2009, 07:09 AM

Hi Mandy! Glad to hear Becca had a good night and David feels comfortable heading to work! I hope her good night is a sign that today will be a good day! :grouphug: Jen

Applemomma

02-20-2009, 07:22 AM

Oh Mandy , that's good to hear. I've already become attached to Becca so you can tell her she has a fan in Nova Scotia! :hug:

Is it possible that she's having weird dreams from the drugs that is causing some of her restlessness? Probably too simplistic an explaination .....

Still praying.....

feedthebirds

02-20-2009, 07:32 AM

Glad to hear that Becca had a good night. I'm hoping she will have a good day today and that her body will adjust to the meds. Thank you for the update. We are still praying for you all.

gcast1

02-20-2009, 08:25 AM

Hey Mandy - yea on the good night! Continued prayers for all of you and much love sent from Texas!:love:

Glenda

3princesses+aprince

02-20-2009, 08:45 AM

Glad to hear that she is Ok this morning!

Disneylvr

02-20-2009, 09:23 AM

Bless the little princess today. I am so glad she had a better night.

llurgy

02-20-2009, 10:16 AM

We have the dvd on playing things almost all of the time......She isnt watching it most of the time but she is obviously listening because she just Giggled!!!!!!!

teresajoy

02-20-2009, 10:29 AM

We have the dvd on playing things almost all of the time......She isnt watching it most of the time but she is obviously listening because she just Giggled!!!!!!!

Mandy, I can't even TELL you how happy that makes me to hear!!!!!!!!!!!!!

:lmao: :rotfl: :rotfl2: :dance3: :cheer2: :yay: :woohoo: :banana: :banana: :hippie:

I just told my husband and he told me that he is looking forward to telling everyone at his work this!!! He has been keeping them all updated on Becca's progress!!!

jmskinner

02-20-2009, 10:47 AM

Mandy that is wonderful. :grouphug:

jenb1023

02-20-2009, 10:48 AM

We have the dvd on playing things almost all of the time......She isnt watching it most of the time but she is obviously listening because she just Giggled!!!!!!!

:banana: :banana: :banana: She giggled! That sounds like a great sign to me! I am so happy for you guys!

CampbellScot

02-20-2009, 11:17 AM

a giggle is a wonderful sign!!!:rotfl:

oh I'm just so glad! Father Mike continually asks about Becca and he will be thrilled to hear news of the giggle!

keep it up Becca!!!:cool1:

feedthebirds

02-20-2009, 11:42 AM

What wonderful news! I am so happy to hear that!

babytrees

02-20-2009, 12:12 PM

What a wonderful update:goodvibes

Giggling is great!!! :banana:

Your family remains in my prayers.

maroo

02-20-2009, 01:04 PM

There is only one thing better than being in Disney!!!

Becca giggling!!

HeatherSue

02-20-2009, 01:08 PM

We have the dvd on playing things almost all of the time......She isnt watching it most of the time but she is obviously listening because she just Giggled!!!!!!!

Oh my gosh, that is wonderful! :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana:

autumnpalm

02-20-2009, 01:22 PM

Oh, I am so happy for you! Becca will continue to be in my prayers. There are many more giggles to come for you, I am sure.:goodvibes

mom2lilnick

02-20-2009, 03:47 PM

That is the best news!

Donald is #1

02-20-2009, 06:17 PM

Wow, I haven't been on-line in a couple of days and what changes!

That is great that she is giggling to the DVD now. :banana:

tinytreasures

02-20-2009, 09:13 PM

what wonderful news :lovestruc

FSUDisneyGirl

02-20-2009, 09:17 PM

what wonderful news!!! :cool1: :cool1: :cool1: :cool1: :cool1:

yay, becca! :lovestruc :lovestruc :lovestruc :lovestruc :lovestruc :grouphug:

teresajoy

02-20-2009, 10:28 PM

The latest update from David:
BECCA UPDATE

Day 15- Giggle

When we got in to see Bic first thing, she was resting quietly and her oxygens were a respectful 77 percent. The nurse said that they didn't have any problems with her during the night and they didn't have to resort to restraining her.

The neuro surgeon stopped by this morning and said that he was really pleased with Bics progress and raised her drain apperatus to 15 cm - so we are getting very close to the magic 20 cm where they will be thinking about removing the drain.

Bic also received another visit from the speech therapist and the therapy dog (black dog is the breed if you are interested). Bic was much more responsive this morning answering questions with a nod or shake of her head. She even formed a few words with her mouth, though I think she was surprised when there was no sound - only whisps of air. She was asked if she would like Ainsley to lie on the bed with her. She said that she would. She put one arm round him and the other under and didn't want him to go.

Later she was asked if she would like to watch a video to which she said yes. She watched it for a short while, then turned away and listened. The suddenly made a noise and Mandy thought she was coughing. Then she did it again and she realized that she was giggling at the movie.

The morning was very tiring for Bic and she was ready for a rest. She slept for much of the afternoon. Later on there was a repeat of yesterday afternoons lower oxygens and a high temperature. They were less pronounced than yesterday, though and her oxygens were only going down to the mid 60's compared with the 50's yesterday.

This evening Bic watched a bit of Wallace and Gromit and had a little giggle for me. It was so nice to hear an emotion from her.

She didn't watch it for long before she turned over and closed her eyes. We are not sure if she is sad because she kept weeping intermittently. We think her emotions are beginning to surface.

Bic hasn't had any pain medication since yesterday evening (oxycoden) and has been doing well on the methadone and neurontin. We don't think she had any Ativan last night.

We think it is the neurontin that is causing the temperature rise and falling oxygen sats simply because they seem to happen after the drug has been given.

This has been Bics best day so far, but it illustrates how far she has got to go before she can leave the hospital.

Bic is now residing at 3TS room 12 (3 tower south).

--------------------------
David

teresajoy

02-20-2009, 10:32 PM

I'm so happy to hear that she is giggling even more!!!

I know she's got a ways to go, but every step forward is so wonderful to hear!! :hug:

3princesses+aprince

02-20-2009, 11:01 PM

Aww, a little giggle :woohoo: You must have cried!

kimmylaj

02-21-2009, 12:13 AM

baby steps baby steps .. so glad to hear becca is progressing well. it makes me so happy

MAGICFOR2

02-21-2009, 12:26 AM

I'm so thankful to hear about Becca's progress!:yay:

Applemomma

02-21-2009, 06:19 AM

:banana: :banana: YEAH!!! Keep going Becca!! We're rooting for you!!! :cheer2: :cheer2:

eyor44

02-21-2009, 08:40 AM

:woohoo: woohoo Becca!:woohoo:
Keep it up girl!

What hospital is it? I can't seem to find it listed anywheres. A PM is good if it can't be listed on the thread.

CampbellScot

02-21-2009, 12:13 PM

so glad to hear the good news of more giggling! Wallace and Grommit will do that to you!!

I also wanted to add that I work with a few kids who have had brain surgeries and they all had moments of unexplained weeping and emotion that would rise out of nowhere. The doctor explained it in terms of all of their systems are turning on little by little...rebooting if you will! It's a very good sign!! It is also appropriate emotion considering what she's been through. These are all wonderful things in terms of moving forward and healing!!

I hope the pet therapy dog will continue to visit Becca! I've always believe that was the key to any recovery! Pet therapy is the key to all that ails!:goodvibes

big loves and good energy to Becca and her mom and dad!!!

miprender

02-21-2009, 12:51 PM

I just stumbled upon this thread with DD5 and we liked looking at all the great pictures of your beautiful girl and the pretty dresses she was posing for. When OMG I realized your poor daughter was in the hospital. :grouphug:

We are sending prayers to your family from RI and hoping for a speedy recovery.:angel:

SunnieRN

02-21-2009, 04:29 PM

Hugs and prayers to Bic, Mandy and David!! God Bless and keep you!!!

tinytreasures

02-21-2009, 05:25 PM

I am so happy to hear all the good news :lovestruc

jenb1023

02-21-2009, 06:06 PM

I am so glad to hear that Becca had a good day all day yesterday! :grouphug:

Baloo

02-21-2009, 09:52 PM

Giggling!! :cool1: YAY!

I think of you're family often throughout my day and keep saying many,many prayers for sweet Becca! :hug:

teresajoy

02-21-2009, 10:33 PM

NEW UPDATE LOCATION

Last night was the last e-mail update. It will be more effective for me to put this information on my web site in future. It will be more current than the once a day e-mail since I will be updating as the day goes on. Another advantage is that you won't have to read my terble splling. My goal will be to close the day's entry by 10pm EST, so don't forget to go back if you visit early in the day.

The web address for those that don't know it is www.schtabs.com.

Just click on the Columbus Hospital thunbnail and go to the bottom of the page for updates.

--------------------------
David

maroo

02-22-2009, 07:35 PM

Hi guys!!

I have been in Disney...still am, although I am sort of taking the night to rest up for my last two days. Can't wait to tell you guys all about it!

But...I wanted you know that I am keeping up on your blog.

I am so glad that Becca seems to be communicating to you guys more. I hate that she took her NG tube out, although I can imagine that it is not so comfy to have it in there!

I do hope her fever goes down!

Let us know (on the blog) how that CT goes!

We are still praying for you guys!! And I will keep "bumping" this TR as long as we should be praying special prayers for Becca to be feeling better!!

So...praying and bumping this thread!

Hope the rest of you guys will join me! :)

3princesses+aprince

02-22-2009, 07:46 PM

bumping and praying for becca

MAGICFOR2

02-22-2009, 11:13 PM

Likewise

jenb1023

02-23-2009, 06:31 AM

Just read your update on the website. I am sorry to hear Becca had an uncomfortable night. Sending prayers and good thoughts for a good CT scan.
:grouphug: Jen

llurgy

02-23-2009, 11:41 AM

Becca was actually upright today AND they had her sat in a wheelchair.
She didnt make it easy for them, in fact I think she was going out of her way to make it as difficult at she possibly could :)

She kept slouching really badly in the chair and everytime they scootched her up she would reslouch......it wasnt because she couldn't hold herself up in the chair, it was because she wanted to sit in a lazy way, even the seatbelt and the chest harness didnt work, she was so determined:lmao: Twas funny that she was so obstinate, I think she was paying them back for having the audacity to put her upright, not only upright but out of bed!! Ye'Gads!! The nerve if them :)
She is back in bed now and wanting to sleep, she has decided to punish me for her chair treatment also by ignoring my questions:laughing: I dont care, at least she is fighting back in her own way, being obstinate and stubborn is better than apathy.

I know there are 100's of post on this thread with everyone wishing Rebecca well and giving advice. Please do not think that I have not read the posts, i have, I have read every one of them and am grateful for the good wishes and the advice. I just cant possibly get around to answering even a fraction of the posts so I have come to the regretful decision that I wont be answering any of the past posts.
From now on, I hope to be able to answer the present and future posts though :)

Love Mandy

maroo

02-23-2009, 01:04 PM

Mandy,

Please don't feel like you have to respond to us! We know u r busy taking care of becca and may not be able to get much time onthe computer! The updates are wonderful, though. You can tell becca that Pluto, Pooh, Tigger, eyeore and Donald all know she is sick and hopes she gets better soon! The card they signed will be sent as soon as I get back home this week.

We are still praying! Hang in there!

p00h4me

02-23-2009, 01:26 PM

Hi Mandy, I've come out of lurkdom to post here. I just wanted to let you know that I sent the box off to Becca and hopefully it'll be there by the end of the week. I thought by getting on here to post that you could just let me know through here that you received the package.

I'm glad that Becca had some time sitting up in the chair today even though she wasn't too thrilled with everyone. This is all part of her getting better day by day.

We'll continue to keep you all in our prayers,
Gail C.

llurgy

02-23-2009, 01:28 PM

Awww, Mary, You are sweet :)

I will let Bic know that all of her Disney pals are thinking of her.
I am jealous, you met Eyeore.....I looked everywhere for him and didnt catch a glimpse.

I hope you are having a brilliant time in Disney and at GKTW.
I wanna be at the village again, it seems like years ago we were there.

Have good times and safe travels
I am going to trawl the rest of the board now, Becca is sleeping and I have time to do a bit of catching up, a bit of R&R time :)
Love mandy

Mandy,

Please don't feel like you have to respond to us! We know u r busy taking care of becca and may not be able to get much time onthe computer! The updates are wonderful, though. You can tell becca that Pluto, Pooh, Tigger, eyeore and Donald all know she is sick and hopes she gets better soon! The card they signed will be sent as soon as I get back home this week.

We are still praying! Hang in there!

jenb1023

02-23-2009, 02:19 PM

Hi Mandy!

I agree with Maroo/Mary - you don't need to answer us. I think we all just wanted you to know that we were thinking of you and praying for you.

I am glad to hear Becca was being obstinate - that sounds like a good sign to me - and so does her sitting in a chair (well them trying to make her sit in a chair).

:grouphug: to you guys!
Jen

llurgy

02-23-2009, 02:29 PM

You would have laughed to see her, everytime they thought they had her secured and upright with the harnesses they found out that she had scoochted again, I dont know what they are going to do with her :lmao:
She was rebelling!!:laughing:

Love
Mandy
Hi Mandy!

I agree with Maroo/Mary - you don't need to answer us. I think we all just wanted you to know that we were thinking of you and praying for you.

I am glad to hear Becca was being obstinate - that sounds like a good sign to me - and so does her sitting in a chair (well them trying to make her sit in a chair).

:grouphug: to you guys!
Jen

llurgy

02-23-2009, 02:48 PM

I am so glad that you decided to come out of Lurkdom:goodvibes
I would have posted that the gift had arrived on here as I know you do read.....well of course you read on here otherwise you would never have known, would you?? Silly me:lmao:

The chair......LOL.....I think it was more the fact that first they got her upright (how dare they) and then to add insult to injury they dared to sit her in a chair instead of letting her lie down again???? The cheek of it.
They had Ainsley the therapy dog there and tried to bribe her with a doggie cuddle....she was having none of it, she shook her head no when asked if she wanted to stroke him.
I thought it was funny! It is just like Becca to punish others by making them feel bad for her.

Love
Mandy

Hi Mandy, I've come out of lurkdom to post here. I just wanted to let you know that I sent the box off to Becca and hopefully it'll be there by the end of the week. I thought by getting on here to post that you could just let me know through here that you received the package.

I'm glad that Becca had some time sitting up in the chair today even though she wasn't too thrilled with everyone. This is all part of her getting better day by day.

We'll continue to keep you all in our prayers,
Gail C.

eyor44

02-23-2009, 05:10 PM

Wonderful news! I'm glad she is responding, even if it is negative responses. I have tagged the website so I can read David's updates each day. Thank you for including us in the updates. Will continue to pray. :grouphug:

Tnkrbelle565

02-23-2009, 05:26 PM

More prayers...glad today was "productive" shall we say ;)

fairygoodmother

02-23-2009, 08:41 PM

She kept slouching really badly in the chair and everytime they scootched her up she would reslouch......it wasnt because she couldn't hold herself up in the chair, it was because she wanted to sit in a lazy way, even the seatbelt and the chest harness didnt work, she was so determined:lmao: Twas funny that she was so obstinate, I think she was paying them back for having the audacity to put her upright, not only upright but out of bed!! Ye'Gads!! The nerve if them :)
She is back in bed now and wanting to sleep, she has decided to punish me for her chair treatment also by ignoring my questions:laughing: I dont care, at least she is fighting back in her own way, being obstinate and stubborn is better than apathy.

Shame on me for laughing at this.:rolleyes: I know what you're saying, though. I have a young friend with some medical issues...she doesn't speak much and lately she hasn't been liking her speech therapist.

So she whispers. At every speech therapy appointment. Therapist will say something for her to repeat, and she does, but in a very slight whisper. I think it's great that she's expressing herself. There is absolutely no doubt what she's thinking...how DARE they switch speech therapists on her!

And to hear that Becca is expressing herself is so great. Like they say about my little Madison "the lights are definitely on in her house!"

maroo

02-23-2009, 08:51 PM

Becca is AWESOME!!! :thumbsup2 :thumbsup2

Lauren got put in her wheelchair the day after they put rods in her back...she was not happy with any of us either! :sad2: But with those rods, she couldn't slouch! :rotfl2:

I was glad to meet Eyeore, too!!! :banana: :banana: :banana:

I wrote down the list from the Big Give site of Becca's favorite characters...many of them I did not see...but I caught the Pooh, Tigger, Eyeore line just as it was opening at AK today and went down there to grab their siggies. :)

I was glad to meet them, too!! I identify very much with both Pooh and Eyeore! :lmao: :rotfl: :rotfl2:

I have had a good time....but am almost done with my little impromptu vacation! :)

The very first thing that Jason's family (tinytreasures) and Mya (mcntosh) asked me when I saw them this morning was for a "Becca update" since they had been traveling! We are all praying for your precious baby!!!! :)

I hope, one day soon, she will be able to go back and read about how famous she is!!!! :)

And...I think we should start a list of the states and countries represented on this thread praying for Becca too...that would be cool!!!!! :) Anyone agree with that? Starting a list...I could maintain it...I would love to see if we can get someone in all 50 of them!!! And, of course, our friends from other nations!

rodeo65

02-23-2009, 09:28 PM

Ok, this will pull me out of lurkdom. I've been reading Becca's PTR since I arrived on this board a few weeks ago. This is the first thread I check each day and I do think about and pray for Becca every day.

So, thoughts and prayers from Ontario, Canada

MAGICFOR2

02-23-2009, 09:41 PM

Oh that's great, Maroo! By DDIL is working on getting written prayers from all 50 states for a quilt for a caring bridge foundation - she has had some great responses!

So to Represent Oregon - The Manfull family from Klamath Falls is praying!

Tnkrbelle565

02-24-2009, 06:23 AM

Prayers and thoughts from Boston, Massachusetts.

jenb1023

02-24-2009, 07:46 AM

Great idea Maroo!

Prayers and thoughts from Harrisburg (Camp Hill) Pennsylvania.

Grammyof2

02-24-2009, 08:15 AM

1st time posting but have been lurking since the beginning.

Good thoughts and prayers from Salem, New Jersey:grouphug:

iu97alum

02-24-2009, 08:50 AM

Prayers from us here in N. Texas (Dallas area!!)

jmskinner

02-24-2009, 09:36 AM

Sending prayers for Becca and the whole family from Tampa, FL.

jham

02-24-2009, 09:38 AM

Prayers from Utah!

Dani C

02-24-2009, 11:10 AM

More prayers coming your way.

fairygoodmother

02-24-2009, 11:17 AM

Prayers DAILY from Modesto, California!

llurgy

02-24-2009, 11:45 AM

You are all so sweet :grouphug: We are going international maybe??

Becca is having the same day as yesterday though she is much clearer eyed and bushy tailed today :)
Still very productive though,using tonnes and tonnes of pampers and henceforth very, very, very sore down there :sad1:

This morning as I was taping her cards to the wall she garbled something at me. I thought that I was hearing things so I asked her to repeat it.
She said "I Want........" I couldn't believe it, she said it in a semi normal tone and loudness, It even sounded like Bic and she just said it, just like that!
She couldn't formulate WHAT she wanted, but she wanted something :)
She has not repeated the talking, not even when the speech therapist came, we were back to the whisper talking then. The speech therapist said that this is normal as she would find things harder to say when she is trying in therapy than just coming out with it like she did earlier.

Neuro came around today, no changes, holding pattern now with the brain drain. No cultures grew on the blood they took the other day so there is still no explanation for the temp spikes,talks are going on with infectious diseases.

Physical therapy are coming around today at 3pm. Time to do battle with the chair again. I dont know how they are going to do with her as she wont even put her bottom down on the bed properly as it is so sore, so sitting in a chair :confused3
I will have to talk to them before they do something that may hurt her too much.

Love Mandy

maroo

02-24-2009, 01:28 PM

maroo

02-24-2009, 01:32 PM

Bless her heart!! I hope her bum gets better soon!!

Negative cultures!!! That is GREAT news! And holding strong on the drain, is good, too, I guess.

And talking!

You go, Becca!! :)

jenb1023

02-24-2009, 01:34 PM

Becca is having the same day as yesterday though she is much clearer eyed and bushy tailed today :)

She said "I Want........" I couldn't believe it, she said it in a semi normal tone and loudness, It even sounded like Bic and she just said it, just like that!

Physical therapy are coming around today at 3pm. Time to do battle with the chair again.

Hi Mandy -

Glad to hear Becca is having a pretty good day and am thrilled to hear she spoke! I will be looking forward to hearing about her battle with PT today.

llurgy

02-24-2009, 03:20 PM

PT....:lmao: She is going to be the bane of their lives

In physical therapy today they decided not to put her in the chair because of her sore bottom, but they did have her sat up at the edge of the bed. When they were talking about doing the edge of the bed, Becca started to moan and again with the talking...."I dont want to get up", over and over.
They still got her up :)
She was only up for about 3 minutes and we noticed that the arm with the PICC had turned purple!
She was promptly laid back down again and her arm returned to normal. No-one here knows what that was about....it has them puzzled.
The Resident Practitioner has since said that maybe a blood vessel was trapped as they were holding her up, but to watch it carefully to see if it happens again.
Told you, Becca doesnt like PT and will even turn her own arm purple to get out of it:rotfl:

Anyways, Becca has been vocalising quite a bit today but since we cant really understand what she is saying most of the time it was decided that we should try and let her write it down. She had a pencil in her hand all ready to do the writing but we couldnt get the paper in the right position. After several tries she promptly laid the pencil down on the table as if to say, "well thats enough of that then....."
Maybe a whiteboard would work.

The PT did arm and leg exercises with her. Yesterday she was asked to move her foot around in circles, she could only do this with her left foot, today her right foot also made near perfect circles!
With her left foot they told her to make 10 circles and then she would be done with that leg, with her right foot they didnt say anything but she counted in her head and withdrew her leg after the count of ten circles :) :) As least as possible, thats our Becca :)

Love Mandy
Hi Mandy -

Glad to hear Becca is having a pretty good day and am thrilled to hear she spoke! I will be looking forward to hearing about her battle with PT today.

autumnpalm

02-24-2009, 03:27 PM

Lots of prayers for Becca from Toronto.:hug: I say one every night!

I love how spunky she is.:laughing: It's so great that even though she's in the hospital, she's hanging on to her great personality. :thumbsup2

Dreamer & Wisher

02-24-2009, 03:35 PM

She is making some progress! Thank you for the updates.
I am praying for Becca from Douglasville, Georgia (near Atlanta)

twinmum

02-24-2009, 03:57 PM

And we're another family saying prayers from Toronto, Ontario, Canada. So glad to hear that Becca is vocalizng more, making her opinions known and so on. Thanks for keeping us updated!

Alison

The Moonk's Mom

02-24-2009, 04:04 PM

Prayers always from North Carolina.:hug:

Plantlady

02-24-2009, 04:05 PM

I'm praying in Kansas!

I'm glad she's coming back to her usual self. I'm thinking of you parents as well... it can't be easy to watch. stay strong.

iu97alum

02-24-2009, 04:05 PM

Mandy - Thanks so much for the updates. IT's amazing what our kiddos will do, huh? I'm so glad that she's showing herself!!! Please let her know that we're thinking about her and can't wait until she's up and around again!!! Hugs to you and David as well. I know emotionally this can't be easy!!

SunnieRN

02-24-2009, 04:06 PM

More prayers from Texas!!
Have you heard of butt paste? It is actually for diaper rash but may help Becca heal. Also if they use a doughnut under her when they try to sit her up it will keep pressure off her bum!!

kimmylaj

02-24-2009, 04:14 PM

prayers from staten island, new york (home of the ferry and the garbage dump:lmao: ) hey thats all we are known for.

AButrcup1

02-24-2009, 05:42 PM

Another a lurker coming out! I have been following Becca's trip since the begining,and I'm so happy for the progress she is making,that girl has some spunk! We are all saying daily prayers here in Connecticut!
Andrea,DH..Dan,dd,Taylorprincess: ds.Braydonpirate:

eyor44

02-24-2009, 06:15 PM

Mississippi is already on the list, but prayers said daily from Picayune.
I'm glad she is doing so well.

mrsksomeday

02-24-2009, 06:41 PM

Prayers from Southern Illinois.

foxfire

02-24-2009, 07:29 PM

I'm in East Tennessee and I'm another lurker but I've been saying many prayers for Becca as well as for mom and dad. I followed the thread about her Wish trip and I loved seeing her joy shine through in the pictures. Prayers will continue as she progresses in her recovery. I love Becca's spunkiness and fighting spirit!

FSUDisneyGirl

02-24-2009, 07:46 PM

Prayers from Fort Pierce, Florida! :goodvibes :thumbsup2 :lovestruc :cool1: :yay: :grouphug:

kath1210

02-24-2009, 07:51 PM

Prayers and more prayers from western Maryland! :goodvibes

MAGICFOR2

02-24-2009, 11:21 PM

How many states is that?

jenb1023

02-25-2009, 07:41 AM

Mandy - what a wonderful update! I think her trying to talk and the foot circles sound like great progress. I love her battles with PT - it shows her spunkiness. Have a great day! Jen

Maroo - looks like we need an updated states list! :thumbsup2

teresajoy

02-25-2009, 08:03 AM

Prayers from Southwest Michigan!

Mandy, I am so glad to hear that Becca is improving! Have they figured out the arm thing yet?

You big meanies making her sit up like that!!!

I love her spunk!!!!

How's the hair project coming along?

Feel free to not answer the questions, just know I'm thinking about you!

celiesky

02-25-2009, 08:39 AM

:tinker: Prayers and pixie dust from Nebraska!

DisMomAmy

02-25-2009, 11:42 AM

New Hampshire lurker here... sending prayers your way!

TwistofLemon

02-25-2009, 12:28 PM

More prayers from North Carolina, for your whole family!

That Becca is quite something, isn't she? :lovestruc

Thanks for sharing all the photos on your site, I'm also lovin that therapy dog! He has his own nametag! :lmao: Too cute for words.

Mandy, you really don't need to respond to all of us. We know you have much more important things on your to-do list! Keep Becca first, and don't forget to take care of yourself and David. :hug:

iu97alum

02-25-2009, 01:53 PM

I think i got everyone since maroo's last list:
California
Connecticut
Florida (2)
Georgia
Kansas
Illinois
Maryland
Massachusetts
Michigan (2)
Mississippi (2)
Nebraska
New Hampshire
New Jersey
New York
North Carolina (2)
Oregon
Pennsylvania
Tennessee
Texas(2)
Utah

Canada-
Ontario

* the 2 means squared.. :)

babytrees

02-25-2009, 03:33 PM

Add Colorado to the list of those praying for your precious family!:goodvibes

I love reading the updates and "seeing" Becca shining through.

mom2lilnick

02-25-2009, 05:04 PM

We are from Nebraska as well. Praying for Becca.

maroo

02-25-2009, 05:42 PM

I am back! I am still praying for Becca!

I see someone updated the list!! Woo Hoo...Becca you got folks from all over the country praying for you, sweetheart!

*** For those of you guys that are only checking this site and not her other one.

They got her up in a chair for a while today...which sounds great! But they did find a blood clot in her arm. They are still deciding on treatment options for this.

Please pray persistently for Becca and her family!! ***

maroo

02-25-2009, 05:48 PM

Thank u so much for updating the list!!! :woohoo: :woohoo: :woohoo:

This is as updated as I know...

California
Colorado
Connecticut
Florida (2)
Georgia
Kansas
Illinois
Indiana
Iowa
Maryland
Massachusetts
Michigan (2)
Minnesota
Mississippi (2)
Nebraska
New Hampshire
New Jersey
New York
North Carolina (2)
Ohio (Mary's sister-in-law)
Oregon
Pennsylvania
Rhode Island
South Carolina
Tennessee
Texas(2)
Utah
Washington

Canada-
Ontario
Vancover, BC

Ok...I think we have all of the states listed at least once! :) If your state isn't on here...feel free to come out of lurkdom! :)

revrob

02-25-2009, 06:03 PM

One more Texan praying for Becca!

LuvGoing2Disney7

02-26-2009, 12:43 AM

Ok...I think we have all of the states listed at least once! :) If your state isn't on here...feel free to come out of lurkdom! :)

Washington is praying

disneymommieof2

02-26-2009, 12:49 AM

Please add Minnesota to the prayer list!!

i12go2wdw

02-26-2009, 08:09 AM

There are prayers coming from Vancouver BC, Canada too :thumbsup2

3princesses+aprince

02-26-2009, 12:29 PM

Rhode Island!!!!!!!

3princesses+aprince

02-26-2009, 12:37 PM

Just Wanted To Stop In And See How Becca's Doing. I Love The Pics With Her And The Dog, How Cute.
So Glad To See That She Is Starting To Talk, And She Wrote On The Whiteboard, That's Great. You Guys Must Be So Happy.

jenb1023

02-26-2009, 12:50 PM

Hi Mandy - just read the update on the website. So glad to hear Becca is trying to speak and wrote on the white board - good for her! I was sorry to hear about the blood clot and hope they can figure out the safest way to deal with it.

The list of states/provinces is growing! I bet we will have almost all of them covered in no time.

:grouphug: Jen

Im_with_Dopey

02-26-2009, 12:52 PM

Praying here in Indiana

newtodis

02-26-2009, 02:01 PM

Hi I just read about this family's story as I'm preparing to leave for our Disney trip in about 15 minutes. I will certainly savor every minute with them more now than I did previously!

Please add Hilton Head Island, SC to Becca's prayer list! (Disney for the next five days!) :grouphug:

maroo

02-26-2009, 02:23 PM

nikkers

02-26-2009, 03:11 PM

Wisconsin is praying also! :thumbsup2

iu97alum

02-26-2009, 03:21 PM

MickeyReeds

02-26-2009, 04:09 PM

Positive thoughts and prayers for Becca and her family from Iowa!

maroo

02-26-2009, 05:37 PM

Mandy _ I read the update and wondered, can she have a port (Port-a-cath) instead of a picc line? I don't know the difference but thought i'd suggest. Glad to see she's getting her spunk back and communicating more! I think about ya'll daily!!!

I bet they would not risk the surgery to place the port.

Those of you guys that have been following all day long for the past week or so...since they started updating on the schtabs.com site... when do they usually update? I was starting to get worried, but won't if they usually update later at night?

Plantlady

02-26-2009, 06:07 PM

I bet they would not risk the surgery to place the port.

Those of you guys that have been following all day long for the past week or so...since they started updating on the schtabs.com site... when do they usually update? I was starting to get worried, but won't if they usually update later at night?

They update late. I check it daily, and it's always in the late night.

MomlvsGoofy

02-26-2009, 07:51 PM

Mandy I have been lurking here for a long time but wanted to let you know that I am also praying from Mass. for Becca.

maroo

02-26-2009, 07:56 PM

they updated the site...

More prayers for Becca and wisdom for the doctors. Praying they can get that clot without causing any damage to anything else.

teresajoy

02-26-2009, 11:34 PM

Oh guys, it sounds like it was a long hard day for you. I pray that the doctors have the wisdom to do the right thing. :hug:

Baloo

02-27-2009, 06:37 AM

Becca's in my prayers always.

eyor44

02-27-2009, 06:47 AM

Poor darling. She is having a rough time of it. Just makes me wish there was something I could do. Mandy, David, we'll keep praying.

jenb1023

02-27-2009, 08:00 AM

Sounds like you all had a long day yesterday! I am thrilled to hear that Becca is speaking and am praying that the blood thinners do their job without causing further complications. :hug: to you guys

p00h4me

02-27-2009, 08:23 AM

Wow, yesterday's report sounded like you all had a long day with doctors and consultations. I don't know how you can keep everything straight but it's needed especially for Becca's sake. Mandy, it sure is a blessing that you can be there to oversee the care that Becca need and to be aware of the subtle changes that occurs so you can let the doctor and nurses know like her arm turning purple when it was held a certain way. Yikes! Now to get rid of that pesky clot without it causing any more problems.

We'll keep you all in our prayers here in New Mexico! I haven't seen my state posted yet.

miprender

02-27-2009, 09:23 AM

Just caught up on the last few days of updates and we are still praying for Becca. Poor thing for all that she and your family is going through.:hug:

maroo

02-27-2009, 12:45 PM

We are praying for you guys!!!! :)

Thank you so, so much for the wonderful updates! We really, really appreciate it!

llurgy

02-27-2009, 01:06 PM

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