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T PLUS 11 Days - WE'RE HOME!!!!!!!!!!!!!!!! :) - Page 3

post #41 of 93
oh and Wendy, if you really want to make them jealous, tell them about the taco bell and Ben and Jerries in the food court! lol. I totally love that combo inpatient!
post #42 of 93
Hmm...so Vandy is in Nashville, huh? At least, that's the Children's Hospital I found when I googled it...I just happen to have family in Nashville...

I just did a quick search of their webpage, though, and didn't find anything specific to 22q. But, it was a really quick search, I might find more info later tonight if I were to look again...
post #43 of 93
I'm glad that your DH could stay even though it's tough work-wise. I hope you can get at least a little sleep at some point. Or a shower at the very least.

My mom thought she was coming home tomorrow but they released her today. My sister is there for a few days and my stepfather (and my mom) work from home. My mom lives in Richmond, which is about three hours away. It would be too much having the kids there so I won't go up until she's healed. Unless she needs me. My sister's kids are with her husband and her inlaws live nearby.

Yep, I'm originally from PA.
post #44 of 93
Thread Starter 
Courey, that's so good to know about the apnea/morphine connection. It has happened a couple of times today, but not as much as during the night.

As far as moving to a room-room, the critical care doc came in a bit ago and tried to get a read on what we thought would be best (should we stay or should we go?). He wasn't very concerned about the apnea either, but did have some concerns about the retching. At any rate, he's deferring to the plastic surgeon.

Singing the praises of Vandy: I like the MWF omelet station myself!! And, sometimes that "boutiquey" place has good stuff too.

And then there's the Ronald McDonald room . . . though it's usually way too crowded for my taste.

Sam, yep, it's Vandy in Nashville (where ALL the pretty nurses work, which is great when you haven't showered in a couple of days ) Check into Dr. Stephen Goudy and Dr. Kevin Kelly (they're both on the cranio-facial team, both ENTs and Dr. Kelly is a plastic surgeon, too). Goudy, in particular, is, I would think, kind of on the cutting edge of stuff. But, then, Dr. Kelly said that he's only had two "revisions" of this procedure in 20 years of doing it - so I'm thinking that's a pretty good track record. He's NOT arrogant, though, which is also refreshing (Goudy's younger and got a little more swagger, but I still LOVE him). Regardless, they are both really willing to talk with you and treat you like a team member, something I really value, and I know you would. And most of the doctors that I've encountered here really understand and operate under the team mentality (amongst themselves, the nurses, AND the parents). So, now that my Vandy commercial is completed . . . .
post #45 of 93
Originally Posted by AndVeeGeeMakes3 View Post
where ALL the pretty nurses work, which is great when you haven't showered in a couple of days
for real, it's like it's in the job specifications... you must be young and good looking to be a floor nurse.
post #46 of 93
Thread Starter 
Originally Posted by MotherWhimsey View Post
for real, it's like it's in the job specifications... you must be young and good looking to be a floor nurse.
The care partners are often worse (read: younger, still in school, and free as birds!).

But, all that said, I've only had one or two (and, actually they weren't the "cute" ones) who weren't super super sweet.
post #47 of 93
Sorry to hear that she is having so much trouble. We didn't have much swelling with Megan but then she didn't have the p-flap done, I can see where they would want the swelling for that. Megan was on heavy steroids for the frist few days because she has issues after surgury and they where concerned about the swelling. She did have some apnea the first night but was better by the second.
I'm sure that at this point you are thankfull for the G-tube, this was the hardest part with Megan, all her meds where oral right from the start so it was h*ll getting them into her and she was getting nothing but fluids in the IV. The pead in the local hospital debated several times sending her back to London for a G-tube, we couldn't do the NG. The decided instead to run TPN in for a few days (they had put in a PICC line when she was under - and took it out when we left, it was in a week but was better then having to have the G-tube I guess)
Good luck and I hope that she improves from now one - although fever is not a good sign, at least from our experience
post #48 of 93
Ugh... I'm JUST catching up now and just finished reading this whole thread. I was so relieved when I saw the post about Monsters, Inc.

Hoping it just continues to get better. How is she draining today? Is the bleeding gone?
post #49 of 93
I'm glad she had her surgery. How is she today?
post #50 of 93
Thread Starter 


We had to stay in ICU another night. The fever kept going back up as the tylenol wore off. Good news is that the swelling has reduced substantially. Her breathing is still labored while sleeping, but it seems to help for her to lay on her side to prevent occlusion in her throat. She's not wild about this idea and we had a lot of fun last night trying to convince her of its wisdom, ease, and end result! She'll get it though, I'm sure.

She's not feeling great this morning, but I think that's mostly lack of sleep, though there is definitely still a good bit of pain. She's had about five ounces of water orally - and that's wonderful.

The feeds aren't going too well. She's really resistant to it AND the retching is really rough. I'm slowing down on it and giving her a break for a little while. I called the GI, but he's out of town until Monday I wish his office had told me that when I asked earlier in the week about seeing him. :

We're going to be transferred to a regular room as soon as a bed becomes available. Cross your fingers that it will be soon. THEN, we'll be able to finally get some rest. ICU is great, but it's really hard to rest here.

Much love,
post #51 of 93
Hang in there! I'm glad the night went okay, even with the lack of sleep. I feel you there!

Be sure you take a break when you can...ask a volunteer from Child Life to sit with her for a while so you can take a shower, take a nap, go for a walk, eat a real meal, etc. Don't forget to take care of yourself!

post #52 of 93
Thread Starter 
We're in a room. Finally. Whew. Still haven't seen the doctor today.

I'm crossing my fingers for going home on Sunday. Still pretty gurgly and having difficulty breathing while sleeping, but, well, :
post #53 of 93
Haven't seen an update in a while...how are things? I hope she's in her own room now, and that you've gotten a nice shower at least!
post #54 of 93
Thread Starter 
Thanks! Yeah, we're in a "real room" with all our old pals on the eighth floor. It's fun hearing how much VeeGee's grown since they've seen her!

We're not going to get to go home this weekend, though . Doc said Monday at the earliest, possibly Tuesday.

VeeGee's slept A LOT since we've been here, and I'm so glad. Her sleep is still pretty disturbed with rattly breathing and what looks like apnea (but isn't). She'll kind of seem to hold her breath, gasp, then snort, and then finally take a couple of good breaths. The doctor said that, basically, she's got to re-learn breathing. I expected the snore (was told it could be like a freight train, but it's really not that bad), but not the gasping. Still, she's in great spirits and we got to go for a walk. She even danced a bit to Happy Feet - which was really cute.

Here are a few videos that we made to send to her best friend and to her daddy:

Here's yesterday, about 24 hours post surgery (the clock is wrong on this).

Here's today. You can see the improvement!

And here's her sleeping (riveting! ). The audio is not good, but you can kind of get the picture. She keeps waking and I'm not sure if it's pain or lack of breath.
post #55 of 93
Oh she looks so good! Really, she does! And SO CUTE!!!!

I"m glad things are going well...hang in there, you'll be home before you know it!
post #56 of 93
Thread Starter 
She's been running a fever off and on and so is a little out of sorts. But, she seems to be not in much pain, as far as I can tell. I don't really know how she registers pain, though. It's rare that she complains at all.

This morning the doctor (not Dr. Kelly, I'm thinking he doesn't work weekends) was in and said that she could see just from looking at VeeGees face that there had been some movement upwards of the throat and muscles. So that's wonderful. AND her voice is definitely different. I was thinking that it was, but wasn't completely sure since I've been with her nonstop. K, though, confirmed what I thought: that it's deeper and, maybe?, clearer.

It could take six months for us to really know whether or not it's been successful, but hopefully we'll start seeing improvements very soon. One other noticeable difference is that she's having water come out of her nose when she drinks. I think this is because she's got to re-learn how to swallow with this increased muscle "control." Bless her heart, she's not having fun with that, but she does keep trying.

I think we'll be coming home tomorrow; I'm crossing my fingers. Hopefully the fever will hold off. She's been sleeping pretty much all the time and doesn't really want to get out of bed for very long. She did tolerate a full feed this morning, so perhaps that will help her increase energy.

Sorry this is all over the place - no writing awards here!
post #57 of 93
That sounds like she is doing great. I watched the videos and man is she ever talking, and I could understand it all - it sounded great to me (mind you I listen to Megan all day long) Megans voice is definatly deeper after the surgury - she sounds simalar to the vocal tone of a child with down syndrome. Apearently in children with clefts the vocal cords are longer (also seen in a number of chromasone annomalies) making the voice deeper.
I hope that fever goes quickly - are they thinking that she has an infection or just a stress fever?
Megan took a good 3 weeks to figure out how to eat and drink properly again and she spit food and drink constantly because she couldn't figure out how to swallow. She never put liquids out her nose - this is good because it was one of the big things we wanted to fix - but I think a little is normal -even adults can put water out their noses.
post #58 of 93
Oh what a difference in the two videos. I'm so glad she is feeling a bit better and thanks for updating us!
post #59 of 93
Thread Starter 
Thanks, y'all!!! I am so pleased to report no fever, high sats and extreme (read: handful!) chipperness!!!

She's going to wear monitors tonight to measure the apnea (or the non apnea : ). And thennnnnnn..... oh please! maybe we'll go home tomorrow.

Janice, thanks so very much for the feedback!!! I'm very glad to know it's sounding similar to Megan's experience.

As always, my dear SN Parenting Forum friends, thanks for the support, info, and friendship. It is always just such a blessing to have y'all to lean on. It's like nothing else, really. "Regular" friends just don't get it in the same way - they're kind, of course, but they don't know . ..

Anyhow :
post #60 of 93
Sorry I haven't posted before now. Glad to hear that things are steadily improving. Crossing my fingers that the plan to head home tomorrow happens.
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