Update on my Kaitlyn

[Snoopy]

Sharon and Tracy,

Do you know how far your daughters are fused?

Tracy,

Don't worry, you didn't jinx anything. I think a lot of our kids have some sort of set back. Jamie had at least two, maybe three. When they removed her catheter, she drank and drank, but couldn't pee. Her stomach was huge! They ended up putting the catheter back in to drain her bladder. She was told she would be going home on day 5 and we ended up needing to stay until the next day because her bowels hadn't moved. It was disappointing to have to stay that extra day, but it was for the best.

Hang in there. All in all, you guys are doing great!

Mary Lou

[pmsmom]

Hi everyone. We're towards the end of day one, and I'm just now feeling pretty good about "being on the other side." So far Kaitlyns labs are looking great, no blood needed, very mild temp 99-100, and she is actually pretty mobile. We haven't sat up yet, but shes rolling side to side. She had some 7up and a few nibbles of toast. She is trying very hard to get better because she is definatly ready to go home. Hopefully all will keep heading upward!

By the way, her back also looks great, so straight!!! Tracy

Wonderful news, Tracy!

Tell her not to rush things!

Marian

[smileyskl]

Mary Lou,

Katelyn is fused from T1 to T12 if I understood correctly. The doctor said he did not have to go down as far as he originally discussed. He is going to explain this more at follow up so I will know more then.. The x-ray from the operating room looked very good but I do have some concerns that what isn't fused will later curve. This is something I plan to discuss further with him at follow-up.

Tracy,

Katelyn is doing sooo well now that we are at home that it is almost scary. Like maybe somehthing has to go wrong because she's doing so good. I think it is maybe because the Lumbar area was not affected. I am choosing not to think about future problems but focus on the present blessing. Hope everthing continues to go well for ya'll. Keep us posted. These kids are such troopers. They are much more resilent than we sometimes give them credit for.


By the way did I mention I am sooooooooooooooo glad to be home and on the other side of this. To everyone waiting, hang in there and best of luck.

[alwayzsomethin']

I'm back, It's been pretty hectic. I keep logging on, start to post, & something comes up. We are on a big roller coaster. Kaitlyns main problem is bloating and loose bowels(can't remember how to spell diarrea? She gets very irritable! Sat night 2/14 was awful. She was up almost every hour. Today, is a better day. She got her epideral taken out this morning, thenthey brought her a portapotty. She got up & sat on it. PT then came so they walked her to the door & back. She was irritated, but did really good.
she did 90% of the work.


She was also taken off valium by IV, because of the severe drowsiness,grogginess. They put her on oral valium. It seems when she takes the pill, she ends up severly agitated. She gets EXTREMELY irritated. I've never seen her that upset. I am wondering if this is a side effect, if this is causing more anxiety rather than relieving the anxiety??? Anyone know??
I might post a separ. thread later if I get a chance. Right now to me, it seems that her only pain is from her belly bloating, causing pressure to her back. She isn't really sitting up a lot either, which I know is a big thing. We try to push it and she gets all worked up.

Marian, Kaitlyn was fused T-4 to L4. I can't remember if I Told you this earlier? I'm running on sleep deprivation. Tracy

[Pooka1]

Hang in there!

These are the hardest few days.

When did her bowels wake up? My understanding is that there will be no bloating or stomach upset if the bowels are awake before eating/drinking/ice chips/etc.

Good luck.

[smileyskl]

I am sorry you all are having such a hard time. I will tell you that every day for us meant a huge improvement. I was so scared when we were getting ready to go home and then when we got home things improved alot. I think that alot of getting better is their will. When Katelyn decided to get up and walk and try to do things, the improvement began. I guess this is where its different for all kids. She had alot of painful bloating but no stomach upset. I would think that the stomach upset is probably really painful so she probably just needs time. I will be praying for you all and give her our get well wishes.

Sharon

[HeatherM]

Sharon and Tracy,

I am so glad to hear that both surgeries went well! Tell the girls to hang in there and that it does get easier!

When I had mine, my stomach didn't wake up for 4 days! I felt super sick all of the time until then. Tell her to just wait it out and she will feel better!

[babachi]

Tracy,
Thinking about you guys. It will get better.
Jesse didn't have those reactions with the valium. Though they lowered his dose of pain meds because of being groggy. The valium was mainly to treat agitation and muscle spasms. Perhaps they can give her something instead of valium?
Hang in there!
Bethany

[Snoopy]

Sharon,

I'm always curious as to how far kids are fused. I sometimes think the length of fusion has something to do with how quickly they recover. I know every kid is different and recovers at their own pace, but the shorter the fusion, the shorter the time in surgery. I don't know if the two are related or not.

I'm glad your Katelyn is doing so well. Remember to keep her from overdoing it.

Tracy,

Your Kaitlyn has a long fusion. My daughter is fused T3-L2.

Have you asked the doctor to take Kaitlyn off Valium? She might feel a lot better if she is off it or switched to something else. Once Jamie was off IV pain meds, we had to try two different oral meds until we found one that controlled her pain. Once the pain is well controlled, the kids feel more like sitting up and walking. Moving around might even help with the bloating. Don't hesitate to speak up.

Remember to take care of yourself.

Mary Lou

[Pooka1]

When I had mine, my stomach didn't wake up for 4 days! I felt super sick all of the time until then.

Did you eat or drink or have ice chips before your bowels woke up?

My kid had nothing, not even ice chips, until Day 3 and had zero bloating and zero stomach upset. Our surgeon was quite strict about it for a reason.

[alwayzsomethin']

Were doing much better....

Its Mon. & Kaitlyn is back on track. The valium definately was a big set back. She had 2 doses & I knew that it was making Kaitlyn worse. I told them she needed something to replace it. they put her on percocet. I has been working great! Her stomach did start to wake up, the problem is she wasn't mobile. She should have been up and walking the day before. But right now she said she loves the world. She feels much better. Her catheter is out, less fluids, less drugs, and she was up & walking around the halls. I definately feel much better also!!!! Tracy

PS Thanks again for the well wishes, great advice, & encouragement.

[smileyskl]

Tracy,

I am glad to here that things are better. Maybe you all will be home soon. If she is anything like my Katelyn, then just getting home will make a world of difference. Wishing you a restful night.

Sharon

[alwayzsomethin']

Sharon, thanks! I will. I can't get over you guys were home on fri. thats great! I have some of the jitters too, thinking about going home- I'm happy, but scared, cause we'll be on our own How are you managing?
I know Kaitlyn will be feeling even more better when she goes home, too! She told them she IS leaving on the 18th. (thats what our dr said, 7 days) I really hope so, or we are going to be in a world of trouble with her, because that is a goal that is set in her mind!

[smileyskl]

Tracy,

She is doing great! It is not nearly as stressful as I thought it would be. She is practically off all the heavy pain meds so back to her "real" personality. The only unexpected problem is her upset about her oppisite shoulder assemetry. She is really dissapointed about it, but maybe it will get better in time. I guess we just didn't expect it. We are so thankful for the straight spine and the success of the surgery. Hope all continues to go well for you. Hugs!

Sharon

[Snoopy]

Tracy,

I'm so glad you spoke up about the Valium. Now that Kaitlyn is moving around, you should start to see more improvement.

Sharon,

I'm sorry to hear about your Katelyn's shoulders.

Mary Lou