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T PLUS 11 Days - WE'RE HOME!!!!!!!!!!!!!!!! :) - Page 4

post #61 of 93
Thread Starter 


Okay, so VeeGee has been experiencing a very erratic respiratory rate. I knew this was happening from watching/listening to her sleep, and she wore a monitor all night (bells going off constantly) to confirm. Her rate is fluctuating between 9 and 30 (dipping below the alarm threshold of 19 once every few minutes). It doesn't stay on any one rate for very long at all.

I expected some difference in her breathing - since that's what the surgery was for - but I'm wondering if this erratic thing is normal and what it might be a sign of/what might cause it or what the effects could be. The docs are coming in at some point, so I will definitely ask them too, but wanted to kind of know what questions I should be asking. I'm trying not to worry. But the overnight nurse seemed to be kind of concerned.

ETA: I forgot to mention that she did de-sat briefly several times overnight.
post #62 of 93
Well, I'd guess that it's a combination of her swelling, any residual drainage, whatever drugs are left in her system, and her pure exhaustion. Her little body has been through a BIG stress! Poor thing!

I would think it's pretty normal, but might keep you in the hospital a while longer

The one other little guy I now locally who had a sphincteroplasty (not combo p-flap) had some significant breathing issues and stayed in PICU for 4 days, then transferred to a regular room and went home almost immediately. It's like he just woke up one morning and his body figured out how to work with it's new muscle arrangement and there were no more problems.

Hang in there, hopefully she's getting better each day!!! Are you getting enough rest???
post #63 of 93
Thread Starter 
Yeah, the intern (or main doc's assistant, whatever "rank" - who was also gorgeous ) wasn't overly concerned but did say that, because Dr. Kelly is so conservative, we'd probably be here another night. Ugh and, well, I guess I'm glad too. Since it's a three-hour drive, I'd really hate to have to come back.

The swelling does seem to be pretty much gone and I'm not sure about drainage. But, I'm deciding to not worry.

I'm kind of an insomniac, so the rest is kind of par for the course. I'm fried, but functioning (which is pretty much how I operate!). I am, however, fantasizing about sleeping in my own bed. I was on a road trip before we came here and so, have only been in my bed one night in the past 12 days. Other than that, it's been double bed (with dh - toooooooo smallllll, and not particularly "fun" since VeeGee was in the double bed next to us!!!!), then futon (slightly smallllllller than the double bed), then ICU chair/single scratchy-sheet family relief bed, and now the "bed" in VeeGee's room, which is better than a cot fo sho, but still not my bed. Okay, so that sentence perhaps does reveal a need for a bit more rest :.

Thank you for asking!
post #64 of 93
Thread Starter 
well, there ya go. we're here for at least two more nights. f^%k!!!!!!!!!!!!!!!!!!!!!!!
post #65 of 93
Megan had irregular breathing as well, but they didn't seem to worried about it - but she has always had irregular breathing especialy if she is stressed or has a fever. She will got from hyperventalting (and de satting) when she is awake and when she is sleeping her airaway and breathing relaxes so much that she gets the apnea. She still had a little apnea when we came home from the hospital a week later, but I slept (sat) with her so I knew that she was OK. It has gotten better with time. This surgury has some immediate improvments - but the really big ones and the full recovery take time. We where told 6 month till we would know the full extent of the improvement. We are 3 months in now and if the difference in the next 3 is the same as the past 3 then it really has been worth the pain.
post #66 of 93
Thread Starter 
Thanks so much, Janice. Yeah, the doctor didn't seem to be too worried. He just felt like we needed to stay until all of the swelling was gone so that we can confirm that the breathing issue is not more serious than we could handle from home. I thought maybe we'd be here one more night, but two, maybe three? bummmmmmer.

On the good side, her voice is definitely stronger and I actually had her make an "s" sound yesterday (first time ever!!!!). That's wonderful.

She is SO over being here. I haven't been ordering the codeine but I'm wondering if I should resume. Every time she sneezes or coughs she cries.
post #67 of 93
Originally Posted by AndVeeGeeMakes3 View Post
well, there ya go. we're here for at least two more nights. f^%k!!!!!!!!!!!!!!!!!!!!!!!

This is one of those times when you KNOW that something is best, but darn it you really don't want to do it!!!

When Connor was admitted this winter for Rota Virus, the Attending Dr came in on day 3 and looked him over, then looked at me and said "I know you want to get out of here, mom...how do you think he's doing?" And I hesitated, I *really* wanted to say "he's doing so much better!" so she would send us home, but I also knew that he wasn't, so I sighed and said "he's still not himself at all" Then after she left I walked down to the coffee cart to treat myself to something sinfully delicious

Hang in there...I wish we were closer so I could come relieve you for an hour, or just spend time having adult conversation!! I love having this forum to "talk" to, but it'd sure be better if we were closer to each other IRL!!
post #68 of 93
That is great news on the S sound - In the first week after Megan picked up F and V and then S by about 3 weeks after - it is fantstic. The really dumb thing is that I had been told by several SLP's that those sounds where not breath dependant and that cleft/VPI kids could make them. Then why right after repair surgury did they show up - hmm.
I feel for you, we had been told that after surgury we would stay 2 nights and there was little chance of readmission - we spent 2 nights and where re-admitted the 3 night - untill a week later. And I we where told several times - ah maybe tommro - then to hear again later - oh another two days . It sounds though like you have an actual bed to sleep in, in both our hospitals I just had a cot and a thin blanket - it sucked, at least they had cable TV.
post #69 of 93
Thread Starter 
I really am thankful for the sleeping arrangements here. Yet another reason to love Vandy.

She's been sleeping all day long, to the point of becoming a little bit of a concern to the nurse and care partner. At one point, too, she had a retching session (nissen) and the nursing assistant grabbed the suction machine and was going after her. (!!!!!!)

I think I made a really big mistake of backing off of her pain meds. I'm guessing that's what's made her so so irritable today and sleepy. Her eyes have been really dilated too and even when she's been awake she's being laying down. I dunno. I finally asked for meds for her and that's been an hour ago. Hopefully that will perk her up.
post #70 of 93
Oh my, I totally missed this thread all together. I hope VeeGee feels better soon and that you get to go home.
post #71 of 93
Poor baby and poor Mama! But a new sound even with her so worn out is great!!!! I hope she perks up soon and that you can get some good sleep tonight. In case it helps with the surgery and recovery gods, I ate a half a Milka chocolate bar today
post #72 of 93
Thread Starter 
Originally Posted by queencarr View Post
Poor baby and poor Mama! But a new sound even with her so worn out is great!!!! I hope she perks up soon and that you can get some good sleep tonight. In case it helps with the surgery and recovery gods, I ate a half a Milka chocolate bar today
Thanks Carrie!!! Let's hope chocolate works.

The staff is starting to ramp up their concern. She hasn't really moved much at all today and has cried a lot (she doesn't cry really). And then tonight, only three hours after she'd had the tylenol, her fever is higher than I've ever seen it. She runs low temp normally, like 96-97 range, and her fever is at 101. So, for her, that's pretty high.

And of course I'm sitting her watching the monitors, which keep going off because her RR is extremely erratic and keeps dipping low low. A few minutes ago it went down to 4 and then hovered between 4 and 8 for a bit. And her sats went down, but only to 90 (which, I'm thinking, isn't really that bad, I know a bunch of kids on the board kind of hover there - I think). And, finally, she's been way tacchy several times.

Ugh - the roller coaster.
post #73 of 93
The pain will make them irritable and sleepy - so will fever, so watch that one. Pain meds (ie tylonal) will mask a fever but you don't want the pain meds to run out of her system, that is brutal and not nice at all. I would also maybe see if they need to run bloodwork to cheack for infection, just to be on the safe side.
Thats horibble about them going after her with the machine - I assume that she is like Megan was - NOTHING in the mouth but liquids, no textured foods, and certainly not medical devices. Megan couldn't even have and NG tube put in, thats why they gave her TPN for a couple days when she had droped 4lbs in 5 days.
post #74 of 93
Gosh, hang in there! Poor thing! You AND little VG You must be so tired of the walls of that room by now!

I was telling my husband last night that she's the third little one I know to have had this surgery (although her's is the first combo I've known) and all three had post-op complications. Nothing terribly serious (Megan's were the worst post op, with the infection and the readmission) but still NOT something I'm looking forward to going through with Connor if it turns out he needs this surgery. Ugh. We've been SO lucky so far with Connor's surgeries...nothing major at all, and easy recovery from each one.

I don't eat chocolate, so I can't send you chocolate vibes, but I am going out for Mexican today, so I'll have a big yummy quesadilla for you instead!
post #75 of 93
Oh poor baby. Hang in there, you know: This too, shall pass.
She is adorable btw, in the videos!
post #76 of 93
Thread Starter 
She ran a fever all night, but as of a minute ago it was down (higher than her normal temp, but still down). Whew! She also seems more alert.

I had the strangest thing happen to me in the middle of the night. I had gone to bed feeling kind of queasy, but I'd only eaten one meal yesterday and it was something fried, which I don't normally eat, so I wasn't too worried. I don't know if I've mentioned here on this board that I have Crohn's Disease, so nausea is pretty much modus operandi.

Well, I got up to get her some water (she's wanting a lot of water!!!!! ) at, I think, around 2 and felt really really dizzy and queasy, cold sweaty, the whole nine yards. I started toward the bathroom and woke up, god knows how much later, on the floor. I have fainted before, but usually during a tachycardia episode. I've never just fallen on the floor and not remembered getting there. I must not have even put my arms out to catch myself because I have a nice knot on my forehead, and my knee is pretty banged up. When I woke up Grace was calling for me "Mommy, wake up!!" and I had no idea where I was or what had happened and just had that impulse to keep laying there until I realized the floor was cold and that the nurses might come in and see me there. So, it was embarrassment, really, that actually got me up.

I had one more almost-episode like that at around four, but just sat down instead of trying to make it to the bathroom.

I'm feeling pretty out of sorts this morning. So, I'm calling uncle and have asked dh to come and help me out. I hate doing it because it's SO his busy season, but I'm not a lot of good to VeeGee if I'm laying on the floor, huh?

It was so freaky.
post #77 of 93
that sounds like orthostatic intolerance. Which from what our dr's have told us it can be annoying but is usually benign. But I'd look into it. fainting isn't normal.
post #78 of 93
Thread Starter 
Originally Posted by MotherWhimsey View Post
that sounds like orthostatic intolerance. Which from what our dr's have told us it can be annoying but is usually benign. But I'd look into it. fainting isn't normal.
Yeah, I broke down and told a nurse about it. I don't want them making a big deal about it, but I don't want to be foolish either. I feel sort of okay today. Really really sore, but okay. I have an appointment when I get back home.
post #79 of 93
I do not understand what veegee had done, but I just wanted to let you knoow my family ad I are praying for you and your lo. My son's is having ear tube surgery and I am worried, I can't imagine what you are going through. Jus wanted to send out warm wishes and good vibes.
post #80 of 93
How's she doing? How are you doing? Your body is telling you to remember to take care of yourself, be sure to listen to it!
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