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T PLUS 11 Days - WE'RE HOME!!!!!!!!!!!!!!!! :) - Page 2

post #21 of 93
(((Hugs.))) I hope you get a bed and a shower. And of course, that VeeGee is as comfy as she can be.
post #22 of 93
Glad to here that she is fighting mad, that is a good sign. Bleeding from the nose and mouth is normal it will go away in the first day or two.
As far as the no no's you can attach a piece of fabric elastic (get it at a craft store) to the tops of the no nos and put it around her back -resonably tight. This keeps them from being pulled off. We also used tape (the stuff they use liberally to hold IV's in place) on the velcro tabs they are a little harder to undo. and yup socks over them and put them on before the shirt so the sleave comes down over them.
post #23 of 93
Glad to hear everything went well! Hope you all get some rest soon.
post #24 of 93
Glad to hear things went so well and fighting already really is a good sign, even if it makes for a miserable night for the rest of you
post #25 of 93
Thread Starter 
We had a bit of a rough night. Grace's breathing is pretty labored, registering apnea every few minutes, and there is some concern about the swelling (some is sort of beneficial - to hold the flap in place, too much, not so great). The upshot is that we're staying in ICU another day. :-(

I'm kind of concerned because the wonderful fight that we value so much is pretty much gone this morning. She's clearly feeling really really bad.

I wish I'd taken a shower in the family sleep room when I had the chance
post #26 of 93
I'm sorry VeeGee's night was so difficult. What is their plan for the apneas, etc? I'm assuming it is obstructional from the swelling, or does she do it some anyway (I can't remember...) Are they still in wait and observe mode, or are they talking interventions at this point?

And not fighting can be beneficial, too. It will allow her body to heal and rest better. Assuming she is getting heavy duty pain meds still, I always find with me that on day 2 I am more tired and druggy because they have built up in my system. Maybe that ispart of the lack of energy?

ANyway, just trying to offer a positive spin and what I would be telling myself I hope things look up soon Hang in there, mama!
post #27 of 93
I'm sorry you had such a rough night.

I think most of that "fight" you had yesterday is from the anesthesia. Today she will probably be tired and sleep alot.
post #28 of 93
Thread Starter 
Thanks so much Carrie. I know you're right. She's really just so worn out.

I think one of the major concerns, that I forgot to mention, is that there is some small amount of bleeding and some post-nasal drip that she is having a really hard time getting out (on top of just the regular saliva). This is exacerbated by the nissen, so she's retching. That just scares the bejesus out of me because I'm concerned about the pressure it creates in there on the stitches.

And, now, she's running a fever.

I know it's all going to be okay.

They're trying to just reposition her so that she's not lying flat - the apnea (which she doesn't normally have) is happening when she's lying flat. Probably it's occlusion relative to swelling.

I think her pain management is pretty good. She's grimacing and crying out every so often, but that's it.
post #29 of 93
Thread Starter 
Quote:
Originally Posted by KatWrangler View Post
I'm sorry you had such a rough night.

I think most of that "fight" you had yesterday is from the anesthesia. Today she will probably be tired and sleep alot.
Thanks!

The fight is actually pretty typical (on a day to day basis) for my little firecracker. As a matter of fact, it's been eight months since we've been in the hospital, and all the nurses remember her as, "That cute redheaded kid that will kick you in the face for taking her blood pressure." --------->

So, that's what worries me. But, I think Carrie's probably right and she's just really doped.
post #30 of 93
Quote:
Originally Posted by AndVeeGeeMakes3 View Post
Thanks!

The fight is actually pretty typical (on a day to day basis) for my little firecracker. As a matter of fact, it's been eight months since we've been in the hospital, and all the nurses remember her as, "That cute redheaded kid that will kick you in the face for taking her blood pressure." --------->

So, that's what worries me. But, I think Carrie's probably right and she's just really doped.
Well at least the nurses remember her. Tee Hee.
post #31 of 93
Goodness, hang in there!

The friend of mine here whose son had the sphincteroplasty surgery had a lot of swelling that caused some breathing issues post surgery, too. He was in PICU for several days, then suddenly one day woke up and was acting almost normal. She said it was really weird, like a light switched or something. She had to fight a little with the drs to give him some doses of steroid to help with the swelling, I don't know if there's a contraindication for this type of surgery, or if the drs on the floor just weren't very familiar with this surgery, because it seems pretty obvious to me to give some doses of steroid to help the airway stay open. So if they're not doing that, ask about it. THey always give Connor a dose after he's extubated jsut because intubation messes with his malacia so much.

Try to rest when you can, poor thing! Is your husband there with you full time?
post #32 of 93
Thread Starter 
She's hanging tough. We were able to take the no-nos off of her left hand, which made her very very happy (she even gave me a thumbs up ).

They've got her propped up pretty well and, though she's still really laboring, it seems to be better.

As far as the steroids, they want to kind of "use" the swelling to prop up the flap for the first little while. If it continues, I'll ask about steroids. They really make her crazy, so I'm hoping they'll not be needed.

I think the docs are all pretty well-versed in this surgery, fortunately (as are the nurses, it seems). Dr. K said that they do three or four of these per week. Plus, we've already seen plastics twice today and they rounded with the floor docs, so that was good.

I just found out that the dc'd the morphine - so that sucks big time. Ugh.
post #33 of 93
Quote:
Originally Posted by AndVeeGeeMakes3 View Post
She's hanging tough. We were able to take the no-nos off of her left hand, which made her very very happy (she even gave me a thumbs up ).

They've got her propped up pretty well and, though she's still really laboring, it seems to be better.

As far as the steroids, they want to kind of "use" the swelling to prop up the flap for the first little while. If it continues, I'll ask about steroids. They really make her crazy, so I'm hoping they'll not be needed.

I think the docs are all pretty well-versed in this surgery, fortunately (as are the nurses, it seems). Dr. K said that they do three or four of these per week. Plus, we've already seen plastics twice today and they rounded with the floor docs, so that was good.

I just found out that the dc'd the morphine - so that sucks big time. Ugh.
I guess that makes some sense (about the steroids and swelling). Connor's never seemed to be bothered by them, but he's only ever had them as a single dose when extubated, so I guess I don't know. I'm glad the drs are well versed in it all...maybe I need to look into Vandy if Connor needs this surgery, my friend here who really likes Cinci wasn't impressed after this last surgery.

Bummer that they dc'd the morphine...only 24 hours post op, that seems a little soon? Maybe they thing it was contributing to her breathing issues some? What'd they put her on instead? How's her fever? It could just be a stress reaction, Connor got a fever after his laryngoscopy at 4 months old, freaked me out completely, but they hardly batted an eye at it.
post #34 of 93
the morphine can supress the respiratory system so they don't like to give it if the kid is having trouble in that area. Did they switch her to something in its place? When Linden had his airway surgery he was in tremendous pain and they gave him one dose of morphine only, and only that because resp therapy had someone in the room at all times till it wore off. It was not fun at all. I hope the swelling goes down some quickly and she's more comfortable soon. It'll be nice if they can get you guys up to the 8th floor with your own bathroom! I wish we were coming down this week cause I'd bring you lots of goodies. It would be awesome to meet. Some day we'll end up there for appointments at the same time!
post #35 of 93
Oh mama, hugs to you! I don't have any words of wisdom or advice, but my thoughts are with you. A week from tomorrow, we'll be sitting in the hospital too.
post #36 of 93
Thread Starter 
They have her on tylenol with codeine and bumped it up from 3ml every six hours to 5ml. And they've put in an order, as a backup, for morphine, if the tylenol doesn't to the job. It seems to be doing pretty good for now.

I think, Courey, that your reason is the one. She's still pretty labored, and choking, particularly when reclined (we're having a hard time keeping her upright).

BUT - we just put Monsters Inc. in and she "mock screamed" and laughed and then wiggled her butt (I ask her to do that whenever she's being silly - it's real real cute) - and she did. I got smiles!!!!!! Those were a sight for sore eyes (really sore ).
post #37 of 93
Quote:
Originally Posted by AndVeeGeeMakes3 View Post
They have her on tylenol with codeine and bumped it up from 3ml every six hours to 5ml. And they've put in an order, as a backup, for morphine, if the tylenol doesn't to the job. It seems to be doing pretty good for now.

I think, Courey, that your reason is the one. She's still pretty labored, and choking, particularly when reclined (we're having a hard time keeping her upright).

BUT - we just put Monsters Inc. in and she "mock screamed" and laughed and then wiggled her butt (I ask her to do that whenever she's being silly - it's real real cute) - and she did. I got smiles!!!!!! Those were a sight for sore eyes (really sore ).
Really TIRED eyes, I'm sure! Perhaps you could get some of that Tylenol with Codeine for yourself Heehee!

I'm still thinking of you guys...hang in there! And I MUST get a lap top, whenever Connor is in the hospital, I'm STUCK with no computer access, which can be torture! If he's well enough to go for walks I can go to the family resource center and get online, but then I have to keep him occupied while I try to goof off myself
post #38 of 93
I'm so glad that she felt well enough to laugh and smile. I'm smiling just imagining it. I hope she continues to improve.

My mom is being released from the hospital right now. I'm waiting for a call from my stepfather or sister. She's in pain but nothing compared to what VeeGee's experiencing.
post #39 of 93
Thread Starter 
Quote:
Originally Posted by 2boyzmama View Post
Really TIRED eyes, I'm sure! Perhaps you could get some of that Tylenol with Codeine for yourself Heehee!

I'm still thinking of you guys...hang in there! And I MUST get a lap top, whenever Connor is in the hospital, I'm STUCK with no computer access, which can be torture! If he's well enough to go for walks I can go to the family resource center and get online, but then I have to keep him occupied while I try to goof off myself
I have my very own prescription!!!! Couldn't risk that but, I can fantasize!


Yet another reason to love Vandy. All rooms (not ICU, but the regular rooms) have computers with internet access. It's wonderful. I'm just a dork about my laptop - I keep thinking I'm going to actually get work done . Silly me.

To answer an earlier question, dh did decide to stay today. I'm glad, and at the same time feel really bad. His job is super stressful right now. He's a landscape designer with 20 crews in the field, so he's trying really hard to juggle everything without freaking me or his bosses out. He's amazing.

Wow, Beth - that was a quick turnaround. So glad she's going home. I'm guessing she doesn't live near you, right? You're a transplant to the South, aren't you?

Okay, gonna eat a samich.
post #40 of 93
lol. I always bring my laptop to vandy too. The in room computers don't have IM and block a bunch of sites so the kids can't get on them. I bring my own wireless thinggy and cat5 cable too. lol.

The morphine can cause apneas too. you were saying that she had a bunch last night and they don't usually happen, so that might be one reason too.

Hopefully the tylenol 3 will cut it from here on out! I'm glad she perked up for a little bit. Any idea when you'll get up to the floor?
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