We are back!!

[francine]

First of all, we really want to thank all that have emailed and posted and prayed and thought about us.... I truly believe this has ALL helped us SO much!! So thank you all.

Maia is doing just great considering all. I am so proud of her and how brave she was and is and how she's handled this...and I have to say that I'm proud of my husband and I too because we really worked hard at thinking this out and trying our best to make it as least stressful as possible for her....and it worked!

There is so much to tell you all .... and I will begin writing in my journal when we get settled in and back into the swing of things.

I have a TON of pictures - especially pictures of the splint (thanks to my diskette angel who brought me some when I ran out!) It's much like the SOL only just a different angle and it has a bar to offer the arm a bit more support. I thought it would be hard to do clothes with it -but it's working out fine. Even the larger footsie pajamas I got fit! I guess doing it first as with the mod quad certainly helped....and now also going back to TCH for the 3rd time makes us feel like 'old hat', we knew the ropes already.

Maia's instructions for the splint is much different than with SOL though...we do not do any ROM's and we have to leave it on for 8 weeks as though it is an unremovable cast. It was explained that if her arm moves in certain directions - she will lose what they did in the surgery. So, we have to do wound checks for the next two days and then the OT there suggested that we get a long underwear shirt (waffle weave) and put that on her underneath the splint (to guard her from her eczemic skin breakdown) and that's it. In 8 weeks it comes off and then we do nighttime 8 weeks.

The thing that I want to tell you all about right away is how we dealt with Maia's pain. Many of you are familiar with the information that Maia has had severe pain when it comes to her bpi surgeries - and this time, when we learned that she needed another surgery, we knew that we needed to do something to help her. Dr. Nath said that he would involve "Pain Service" - I guess this is a specialized group at the hospital who deal with pain issues - and he did and Maia was able to get a PCA (I forgot what the letters mean... I think Patient Control Assist? or Access? I don't know..but I'll find out). This is basically a morphine pump that is started immediately after surgery...they hook it up to your child's IV line and you get a button.... Maia has a specific dose that could be given within a certain time frame...and we could dose her small amounts every 20 minutes....

What this did was it kept her pretty balanced and she never dropped down into the 'dregs of pain' (do you know what I mean?)... her ups and downs were less being dosed like this - we just kept on pressing the button for most of the day until later that evening when she could go for longer times without it, it seemed. By keeping her more balanced like this - she never got severely stressed or fearful - and I think THAT is the key for her! We morphined her for the splintmaking and then during the splinting the IV actually fell out...and since then she only needed some tylenol here and there...and we'll see what happens tonight. But all in all I have to say that it was a complete turn around from what happened last time.

SO - with all that said - if your child has issues with pain and has had trouble with surgical pain, etc. or has low pain tolerance - I think this is something for you to think about! I am going to write the director of this group and thank her up and down...I already spoke to another of the big wigs and thanked him too. I am just amazed at the difference and so grateful that this was something that Maia could get.
The one thing that is important with this pump - is that you have to be there with your child at all times - you cannot leave your child. So since we never leave maia alone anyway - this was not an issue for us.

TCH is just great..we had a wonderful experience this time...even waiting in the recovery room and secondary recovery room for so long was ok because there was a real crowd of bpi families there..and a bunch of us that have been communicating on here all the time - so it felt like 'home' in a big way! Sad in one way but great in another! There were actually three bpi families on the same plane we flew in on - how uncanny is that?

The new building is spectacular - the colors are REALLY bright! (yellow floor = yikes!!) LOL LOL
I have lots of pictures... the kids art that is all over the place is just unbelievable. I have some pictures of that too.

The rooms are like little apartments - there is SO much storage and the bed fits two ok...it was cold at night but we had control over our own thermostat so we just knew to turn the heat up to 80 degrees at night so we didn't freeze out - 80 was perfect because it's cold by the window. It was wonderful being able to shower and bathe in a VERY spotlessly clean bathroom.

It just seems like the attitude is different there...everyone was so helpful. They asked so many times how they could help and if there were any religious needs that we had that they could help with - I thought that was very thoughtful.

Well so that's the summary.... I'm glad to be back home and I can't wait to sleep in my own bed..although Maia really liked the bed that moved up and down and all around.

Thanks again for your well wishes...

zzzzzzz
off to sleep I go,
nite nite
-francine

[admin]

I am so glad the surgery went well. Wishing Maia a speedy recovery. Lots of Love and kisses too!

[AK1999]

Francine, I am so glad the surgery went well. Wishing Maia a speedy recovery, and lots of hugs and kisses.

[Kathleen]

Francine

Glad your home safe and well and Maia is doing so well....
Looking forward to a speedy recovey for Maia and lots of new movements...
Kath

[Karrie -- Md.]

Francine,
So glad to hear that things went so well for you all this time. Best wishes to Maia for a speedy recovery. Nice to hear about the new rooms, can't wait to see the pictures. We will be heading there in February for our first time. So many questions to ask. I am just so totally clueless about the whole thing, and I will be flying alone....YIKES!!! Anyway, happy to hear you all had a nice experience and that Maia is doing well. Take care... Karrie & Kyle

[Missy]

Hi Francine

So glad to hear that Maia's surgery went well and that she's feeling alright. I'm sure you are very relieved that the surgical part is over with. Please know that my prayers are with you.

Mitchell had the PCA when he had his surgery at Shriner's. We were so glad that he had one...he used it quite a bit. (Although I think he liked the noise the machine made when he pushed the button more that anything!!) We of course stayed in his room with him and I kept pushing the PCA button all night so he wouldn't wake up in pain.

Anyhow, here's to continued healing and heath. Give Maia a big hug from us. I've been thinking about her a lot!

Love,
Missy

[Bridget]

Welcome back, and I am glad to hear that all is well!

Bridget

[dezarae]

Hi Fran!

Sounds like Maia's brace is slightly different than Logan's, as well as the 1st 8 weeks.

FIRST - Logan does not have the 'bar' that you described. His is like the SOL splint, except at a different angle.

SECOND - We received instructions to take the brace off every night to do the hand exercises, bending at the elbow, plus we were instructed to lower the 'surgery' arm to the side. They said this was to prevent everything from becoming too tight - that we are to do it slowly so it doesn't 'shock' what the surgery accomplished.

I wonder why Logan does not have the 'bar' you spoke of, plus why he is to do the exercises. I know every child is different, and this shouldn't bother me, but I am very curious!!!!! The exercises do not hurt him, in fact he reminds every night not to forget to do them. As soon as the brace comes off to wash up he starts doing them himself. What a trooper.

Anyway, glad to hear that you are at home and Maia is doing fine.

Dez