Sunday, June 6, 2010

Positive results!


First of all, we are home! We got her back on the nasal cannula yesterday and she was doing well on 2L so we got the heck out of there! So that's her "going home" pic. She was kind of out of it. She's *really* exhausted (I would be too!).

Ok so positive result 1) She does have less secretions. I don't think we'll know what her baseline is until the swelling is completely down, but so far so good. She still gets rattly in her upper airway but it is NOTHING compared to before. She's not drooling everywhere and she doesn't have foamy saliva pouring out of her nose. She's not gagging and choking. She still coughs when it catches, but it's not an overwhelming amount and so she's not actually "choking" on it.

Positive result 2) She needs less oxygen already! How wonderful it would be to get her off this damn machine! I've just been spot checking her but she's doing wonderfully. I just turned her down to about 1 1/2 L this morning (it's hard to tell the exact setting on our machine) and she's still at 98-100 (she never stayed there before, even on 3L). I'm trying not to get overexcited and turn her down too quickly because that may backfire.

Positive result 3) I didn't even realize until now it was a problem, but her heart rate has gone down. I never considered it "high" before, but since she's not working as hard to breathe, she's leveling off at a more "normal" heart rate, which is about 15-25bpm lower than before. Sleeping she was at 90ish, now she's in the 60s and low 70s. Resting she's at around 100 to 110. Before she was 120-130. I can't wait to see what happens when she gets excited or gets a fever. Excited (or upset) she goes to 150-160 usually. Fever, she gets up to 180-190. So we'll see! I imagine it's better for her heart to not have to work so hard, even if it wasn't working "super" hard before.

Positve result 4) She's peeing again! Ok, so she peed before, but it was getting to the point where it was only 2-3 times a day. If we tried to give her extra fluid, she'd just have more secretions! I think we'll actually have to cut back on her fluid now! It's bountiful and almost completely clear. Compared to dark, smelly, and scant before. Proof positive that she's losing a LOT less fluids through her mouth.

So far there are no negatives. I could list the swelling, pain, and hospital stay as "negatives" but I just can't bring myself to do it. Those were expected (ok maybe we didn't expect such a *long* hospital stay) and you know, no pain, no gain! We were able to easily control the pain. The swelling was bad, but not bad enough that she needed intubated post-op. C-pap is not a huge deal. It was worth it. Totally.

It's still a new procedure and they still only do it at this hospital. The doctor who did it is very passionate about his work and is trying to get other hospitals to start doing it as well. I've been taking pics of Charlie's progress and making notes of every change. He wants to use our experience in his teaching. What an honor that would be if Charlie could help other children!

Botox doesn't work a lot of the time. It certainly did nothing for Charlie. Meds didn't work. The more invasive surgery is only supposed to remove 2 out of 6 glands (removing more would ruin the nerves you use to smile). THIS procedure worked. And worked well. I'm so happy I could cry! He said folks fly in from all over to have it done. If your kid needs it done...DO IT! Do it, do it, do it!

Oh wait, there's one negative result. I can't hear her breathing sometimes. LOL I FLEW out of bed this morning because I couldn't hear her. I always dread the day that it might mean she's actually STOPPED breathing, but that day wasn't today. She was awake, but breathing SO quietly. I turned on her pulse-ox and she was 100. That's going to take some getting used to. :-)

10 comments:

Happy Frog said...

awesome news!!

The 5 C's said...

What a wonderful update on Charlie. I'm glad to hear that it was all worth it & is helping her so well.

kozer1 said...

Wonderful!! I am so glad it was a great success! She must be so much more comfortable with breathing. I hope she can go so far as to even get OFF of the O2...That would be awesome!

Sherrie Bee Bop said...

VERY good news!!! I'm glad to hear she's doing so well! I hate that you can't hear her breathing sometimes, that's scary. It's going to be really hard to mentally adjust to that. But overall, I think the results are great and you'll both be so much better off!

Kat - Ruthie-dos.blogspot.com said...

that's awesome! I think just the fact that she was losing so much fluid out of her mouth to dehydrate her and possibly (long term) damage her kidneys is enough reason for this to be a procedure that can be done at any major hospital in any state for kids with these issues.

I honestly think even if all it did was that one thing, it was worth it. To hear all the other good things this procedure did for her... I'm welling up with tears of joy.

momtoS said...

Awesome update!

Shauna said...

Very true Kat. It's been a couple of days and honestly, her secretions are back up a bit. I have no idea where she's going to stabilize as far as that goes. We still suction frequently, but she's not choking and she's not drenching rags every 5 minutes. Even with the increase in secretions, she's peeing like crazy. I adjusted her feeds once, but I need to do it again. I can't imagine what that alone was putting her body through.

ANewKindOfPerfect said...

Wow, what a great update! I hope that Charlie continues to do so well. Sounds like surgery was a success!

swgoats said...

So happy for you both - sounds like an answered prayer!

ady said...

Wow, that is great news! I was wondering if you might have some contact info for your doctor I could get... I'd love to learn more about the procedure. Kylee is like a fountain too with no meds. her saltropine still works but has side effects of course. Robinul has pretty much quit working since she's been on it so long. It'd be great to have a way to control the gurgles with no meds!