PDA

View Full Version : Lindy's surgery



LindysMom
20th July 2005, 06:05 PM
Hello to everyone. I have for some reason been putting off posting information about Lindy's surgery. I guess because it was somewhat traumatic. I've also been busy trying to entertain a one and a half year old who suddnly finds herself in a body cast. Not much fun. She's used to being able to walk and play and now is limited in her mobility.

Her doctor decided at the last minute to attempt the seperation surgery rather than fuse her spine! He said it's a "shot in the dark", but feels it's worth a try. The worst thing that can happen is that it fails and her spine naturally refuses. At least we'll know that we gave it a try. I'm just afraid that we'll have done this for nothing.

We got to New Orleans at about 6:00 in the morning and they admitted us. Handing her over was even harder than I could have ever imagined. A mother's job is to protect her child. To hand her over, even when it was for her own good, actually went against every natural maternal instinct that I have. Her surgery took close to six hours. Six HAND WRINGING hours. When we were able to see her she didn't look anything at all like herself. She was swollen from being on her stomache for so long. After many hours of suffering one of her nurses realized that her pump that was supposed to be administering her morphine had malfunctioned. My poor baby had gone with nothing at all for pain from about 2:00 p.m. until about 1:00 a.m. None of the nurses realized it because the computer in the machine registered that she had been getting it. It wasn't until one of the nurses decided to investigate further that we realized that the morphine bag was almost full. It wasn't their fault. It was just one of those unfortunate things that sometimes happen. After that, they were able to get her comfortable and keep her that way.

She was casted four days later. She didn't like it at first, but now seems to be adjusting to it. I was heartbroken to have her put into the cast, but was relieved at the same time because once it was on, I was finally able to hold her again. She wanted to be held, but they couldn't allow me to until she was casted. My arms physically ached to hold her and it broke my heart not to be able to pick her up when she cried for me.

All in all things are getting better. We go back to New Orleans for a cast change next week. I'm hoping to get some results on a biopsy that was done on her growth plate. Please say a couple of prayers for my Lindy.

I don't mean to sound negative or scare anyone with our story. If I've done so, I apologize.

sins
20th July 2005, 07:27 PM
Hi Holly,
First of all, I'm so pleased that ordeal is over for you both, I can only imagine how difficult it was to let go of Lindy as she was taken in for surgery.Hopefully, they'll have some good news for you when you have the cast changed next week, did they remove the hemivertebra? Did this have any effect on her level of Kyphosis?
Sorry for all the questions, you sure have had a lot more to contend with than most other parents.
I hope Lindy makes a speedy recovery and that everything goes according to plan.I'm so pleased he didn't fuse her spine at this point, what he did was well worth the chance.
Keep us updated and if you feel it's getting a bit much for you just log on here and feel free to vent your feelings.
Sins

Sealy
21st July 2005, 03:41 AM
My heart aches for your poor baby - having to go for so long without any pain medication ! How did she react during the period the morphine wasn't working ? Did she show signs of pain ? I've read that young children exhibit different symptoms to pain i.e., sweating, fast heartbeat etc... I'm not really sure I understand what your ortho did... were Lindy's vertebrae fused to begin with ? I'm glad to hear he didn't fuse her vertebrae. Is there a chance that this one surgery could be it i.e., no more surgeries ?


Hugs, :squeeze:



Sealy

LindysMom
21st July 2005, 04:09 AM
Thanks for the kind replies and concern for my baby girl. You guys both had a couple of questions about Lindy's spine. Lindy had a hemivertebra which caused her scoliosis. Along with the hemivertebra, she had a complete anterior failure of segmentation. That is where four of her vertebrae were fused together anteriorly. (sorry. I'm a horrible speller. I'm sure I'm slaughtering most of these words) The area that failed to segment caused her to develop a 72 degree kyphosis. Removing the hemi will hopefully stop any further develpment of scoliosis. We are also hopeful that the segmentation procedure will be successful. We won't know for about another year or so. We are keeping our fingers crossed and praying that her vertebrae don't start to refuse on their own. Hopefully the cast she's been wearing will help to prevent that from happening. It has something to do with the way her doctor positioned her spine. There's alot about it that I don't understand.

Sealy, you asked about how I was able to tell that she was in pain. For one thing, she made this horrible sound that I hope to never hear again as long as I live. Her breathing was more rappid than usual, but I don't remember any excessive sweating. I think a mom just knows. Your instincts tell you what is normal and what isn't. At first her nurses kept telling me that they believed she was just out of it and confused from her medication. I knew better. I know my baby. Fortunately they listened to me.

We go back next week for cast change. I'll update ya'll if anything changes.

andrea
21st July 2005, 09:57 AM
My heart goes out to you both Holly,you have been through so much. At least it's over now and you can look forward knowing that surgery for the moment is done with. Casting is very difficult to adjust to at first. I have to raid my memory to remember it all as it is now second nature to us, but I do remember a period of adjustment. I'm sure she'll get used to it really quickly and be back doing the things she was before.

Good luck with the next cast change and thanks for keeping us updated with Lindy's progress. Fingers crossed for some good news.
:squeeze:
Andrea

Amazed Jean
21st July 2005, 10:35 AM
Holly and Lindy. Hopefully the worst is over. We are hoping and praying that things get easier for you both.

newgirl
21st July 2005, 11:08 PM
Holly,
I am glad the surgery went well, as Andrea said it does take a while to adjust to the cast , but every days brings an improvement. It must have been so heartbreaking for you not to able to hold Lindy after her surgery especially when she was in pain :cry:
I hope everything goes well for you now and that the surgery will have proved to be a success.
Nicola

jfkimberly
22nd July 2005, 10:03 PM
Holly, I am so sorry for your overwhelming experience with surgery... especially that bit about her morphine pump. But please trust me when I say Lindy won't remember a bit of it. And don't worry about the cast, either... she'll probably surprise you by overcoming that minor obstacle to be far more mobile and active than you can keep up with.

I am rather impressed by the surgeon's decision to segment her fused vertebrae, rather than fusing the opposing side to prevent kyphosis. If successful, this will lead to a much better outcome years down the road, because she'll have continued thoracic growth... that means more room for her lungs and other vital organs.

As someone who was fused at 11 months, I can tell you personally that even if it doesn't work, Lindy has a promising future. But if it does work, she can hope for full size (or at least bigger) lungs when she gets older.

LindysMom
23rd July 2005, 04:02 AM
Thanks Kimberly. How did you know exactly what I needed to hear?
Holly

jfkimberly
23rd July 2005, 07:06 AM
I was once in Lindy's place, and I know what my mother went through. Between my mother and me, I am absolutely certain that I had the easier time of it. *warm hugs*