Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)

[maroo]

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]

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.

 

[Baloo]

Becca's in my prayers always.

 

[eyor44]

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]

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. to you guys

 

[p00h4me]

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]

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.

 

[maroo]

We are praying for you guys!!!!

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

 

[llurgy]

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

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!!

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

 

[maroo]

Fabulous!

Thank you so much for the update!

So sweet that she is holding your hand. Must have taken you forever to type all of that one handed...

Glad she got a new bed.

Months to get rid of the clot is shocking...but it sounds like they are certainly being careful with our little friend...kudos to them!!!!

I wish she could get her bum feeling better soon. That is a real pain, I am sure - for everyone, really!

Thank you very much for the update...Are you copying and pasting from your site? We will be glad to do that for you...so you don't have to type anything twice...?

We really appreciate the updates! It helps so much to know exactly what to pray for!

 

[jenb1023]

Hi Mandy! Thanks for the update!

I am so glad to hear that she is speaking and that speech therapy is going well!

I hope she gets some relief for her poor bottom soon.

I am sad to hear that the clot will be around for awhile but glad to hear they are being cautious.

So sweet of her to want to hold your hand.

I wish there was more we could do for you all but I am guessing you are probably a 7 hour drive from here so thoughts, prayers and packages will have to be enough.

Take care! Jen

 

[eyor44]

Hello Mandy! wonderful to hear from you. Sounds like they have a plan about the clot. Yay!
WooHoo on the talking!
WooHoo on the new bed!
WooHoo on the brain drain cap!

Now if we could just get you some Bourdeaux's Butt Paste, we might could get her to feeling a bit better. But I'm not certain it would be good on open sores. I'll check next time I am at the store.

 

[maroo]

Lauren's doctor finally prescribed her XENADERM ointment. It helps prevent pressure sores. If she gets a red spot, we can put that on there and gets better very fast.

The medicine is designed to attract blood to the area and keeps it "hydrated"...at least that is how her PT explained it to us. If we use it...she does fine. If we forget it on a trip or something...we pay for it. (Actually Lauren pays for it! But we have to hear about it! )

Anyway...maybe that would be an option for Becca. It is a bum saver for Lauren!

 

[jessica52877]

I just wanted to say that I am still following along and praying for your family and Becca everyday! There is not a day that goes by that I don't think of that smiling face!

 

[nikkers]

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!!

Great suggestion. I love Butt Paste. There is also a perscription butt paste. Just a little stronger. When DS was little his butt was very sensitive. It would get so red, and almost blister like a sun burn. The perscription butt paste was amazing. We also used the over the counter Butt Paste.

 

[Khalana]

Still praying here too! I'm so happy to hear that she seems to be more like herself and that the brain drain is done!

 

[SunnieRN]

Great suggestion. I love Butt Paste. There is also a perscription butt paste. Just a little stronger. When DS was little his butt was very sensitive. It would get so red, and almost blister like a sun burn. The perscription butt paste was amazing. We also used the over the counter Butt Paste.

Poor baby!! My first grandson had the prescription kind also! Great stuff!!

 

[Tink rules]

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

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!!

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

Will speak again soon,
Love Mandy

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

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

Good Luck!!!

 

[maroo]

We are still praying for Becca!

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

Becca looks so good sitting up!!

 

[llurgy]

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

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

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

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

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

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