We are back!!
Posted: Wed Dec 12, 2001 11:37 pm
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
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