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#1 of 93 Old 04-21-2009, 11:55 AM - Thread Starter
 
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In twenty four hours, VeeGee will likely be in the pre-op room at the hospital, yanking off her pulse-ox and refusing to wear the hospital gown (I never force that - it's itchy!!!). I had to take her to the doctor yesterday morning because she's been hoarse the past two days and I was worried that there could be the beginnings of an infection that would knock her out of being able to have this surgery. Doc said that her ears, throat and nose looked great. Lungs sounded great. Knees looked perfect (VeeGee always insists on a knee checkup!). But she's still really hoarse and kind of snotty this morning. Ugh - please don't postpone!!!!! We've waited so long for this, agonizing about whether or not it is the right decision for her, agonizing about how the recovery is going to be different this time, since she's so much older and more mobile than she's been in previous surgeries. I'm dreading the time in the hospital primarily because I'm worried about how we'll keep her still enough to get better. She's so wonderfully active now.

The surgery, which is going to be a combination of two different surgeries, a pharyngeal flap and a velopharyngeal sphincteroplasty, is supposed to help her be able to have more productive speech by regulating the flow of air. I've read many accounts of how wonderful this surgery is and what incredible gains children have made after having it. And then I've heard the opposite. It's really hard to know how to choose these things. I mean, darnit, I'm not a doctor, Captain, I'm a writer!

So, anyhow, please send some good juju our way. I really want her to be in top form for tomorrow. She's got to be!!!!!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#2 of 93 Old 04-21-2009, 12:39 PM
 
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Good luck.. it must be very scary to have your child undergo surgery.

SAHM Michael 01-07 & Emmy 12-08
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#3 of 93 Old 04-21-2009, 03:12 PM
 
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You know I'm anxiously watching to see not only how the surgery itself goes, but how recovery goes, and how her speech changes! Connor made new one or both of these surgeries, also, so I'm a-watching!

Good luck to everyone!!! And to keep Connor quiet when recovering from illness or surgery we do a LOT of walks around the hospital. He happily sits in those plastic cars or wagons. It's pretty boring for ME, but at least he's not in his bed trying to pull out his IV or throw toys out of his crib! Of coruse the darn battery on his IV pump only lasted 30 minutes, so we'd have to plan our excursions accordingly or it would start beeping at us!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#4 of 93 Old 04-21-2009, 03:20 PM
 
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Oh wow! I didn't realize it was surgery time already! Best of luck to all you--I am anxious to hear how it goes and see her progress afterwards. Thoughts and prayers coming your way
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#5 of 93 Old 04-21-2009, 04:24 PM - Thread Starter
 
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So, I'm starting to get more worried about the laryngitis. I mean, I guess that's what this is. She's been hoarse for three days now and just a little snotty today and yesterday. We traveled A LOT this past weekend and sometimes that length of time in the car seems to make her a little under the weather.

But then the doc said her throat looked fine yesterday. Anybody know if I should be worried relative to the specific surgery (even if it's just allergies)? Carrie?????

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#6 of 93 Old 04-21-2009, 09:07 PM
 
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Even if she has laryngitis, you are probably fine for the surgery. Here, they have to have a fever over a certain point or other significant coldy symptoms (hard productive cough, etc) to even consider delaying surgery, and even then it really depends on the preop assessment at the last minute. When Jimmy had his last scope (and he is generally intubated for all procedures), his whooping cough results were "inconclusive", and his symptoms were consistent with having it; the anesthesiologist and the ped consulted the day before, and he still got the go ahead.

As far as the specific surgery, I can't imagine unless there is active infection or pharyngeal irritation or swelling (which it sounds like there is not) it should impact it at all. You might want to ask about any antihistamines before/after surgery if that would help or hurt the healing process 9keep swelling down, reduce postnasal drip, maybe?), but I can't think of any logistical reason why it would be a problem. If she is intubated, the laryngeal irritation is likely to be worse than normal, so she may sound even worse and have a particularly sore throat after.

I really hope everything is a go tomorrow--I am pulling for you. This has been such an incredibly stressful decision for you, I can only imagine how a potential wait would feel
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#7 of 93 Old 04-21-2009, 09:40 PM - Thread Starter
 
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Thank you thank you thank you, Carrie!!!!!!!!!!!!!! I really appreciate it.

Her cough is same as it always is. It sounds pretty wet and gunky, but instead of bringing anything up she generally starts retching (that's a chicken or egg kind of issue related to the nissen I guess).

At any rate, still no fever as far as I can tell (of course our thermometer is AWOL!!!!). She does seem a little off, but so is dh right now, so it's either a mild cold or the crazy allergies that they share!

Thanks again.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#8 of 93 Old 04-21-2009, 10:04 PM
 
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Good luck tommoro, she will do just fine!. We've always seemed to pic up the snoty nose raspy thing a day or two before and have never had them cancel - they are well prepared for these things in kids.
We always take tonnes of books, stickers, crayons and all kinds of other junk that Megan picks out at the Dollar store the day before - I give her an "allowance of $20 of dollar store junk and we have a whole backpack full of stuff that she plays with before and after. Lots of good sensory stuff to help with the sensory issues that we encounter in hospital.
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#9 of 93 Old 04-21-2009, 10:37 PM
 
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Good luck!

To my husband I am wife, to my kids I am mother, but for myself I am just me.
we're : with and : and
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#10 of 93 Old 04-21-2009, 11:40 PM
 
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good luck! thinking of you guys!
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#11 of 93 Old 04-22-2009, 01:17 PM
 
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Thinking of you guys today! Hope everything is going well!
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#12 of 93 Old 04-22-2009, 01:45 PM
 
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hope she's back there and all is going smoothly!!!!
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#13 of 93 Old 04-22-2009, 02:13 PM
 
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((hugs))
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#14 of 93 Old 04-22-2009, 02:23 PM
 
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Update when you can...I'm thinking of you guys!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#15 of 93 Old 04-22-2009, 02:24 PM - Thread Starter
 
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Thanks, y'all. We're in the sub waiting room. She did indeed refuse to wear the icky scratchy hospital outfit - so we're trying to keep her in the room - wouldn't want to flash everyone in the hall!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#16 of 93 Old 04-22-2009, 02:27 PM
 
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Originally Posted by AndVeeGeeMakes3 View Post
Thanks, y'all. We're in the sub waiting room. She did indeed refuse to wear the icky scratchy hospital outfit - so we're trying to keep her in the room - wouldn't want to flash everyone in the hall!
Oh dear no, wouldn't want to do that!

I had Connor in one of his brother's t-shirts once, just enough to keep him covered and warm, but it wasn't a hospital gown!

Good luck, I'm sending all my positive thoughts to you today!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#17 of 93 Old 04-22-2009, 04:50 PM - Thread Starter
 
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She's in the OR now, finally. I forgot to ask the doctor how long the surgery is supposed to last. Momtoalexsarah, how long did Megan's take?

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#18 of 93 Old 04-22-2009, 05:59 PM
 
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Megans took 4 hours, we where told 3, but of course when they got in there it took longer. I would immagine that since the are also doing a p-flap you may be looking at longer yet.
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#19 of 93 Old 04-22-2009, 09:12 PM - Thread Starter
 
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She's out of surgery and Dr. Kelly believes it was a great success. We had some concerns when his intern didn't know anything about the combo p-flap/sphincteroplasty, and didn't get to talk to Dr. Kelly until afterward. But he did do the combination. So, basically, they've made a purse string in her throat along with taking some tissue from the very back and making what's kind of like a curtain. These two things should help her regulate air and improve speech.

Right now, she's pretty doggone angry, and fighting the IV and pulse-ox tape pretty hard. Each arm has two no-nos (kind of like splints to make her unable to move her arms) with socks on top of those because she's such a Houdini. She's already wiggled her way out of all of that twice, so we're taking turns keeping our hands on her to prevent her trying again.

Her mouth is pretty bloody and swollen, and there's a little bit of bleeding coming from her nose, but those were both to be expected.

We're in PCCU right now and will be here until, at least, 9am. We hope that we'll be able to get one of the family sleeping rooms (with shower and private bath) that they give out on a first come first serve basis (based, in part, on how far away you're from - so we're pretty likely to get one). That way we can take turns resting throughout the night.

Thanks so much to everyone who's sent love and prayers and good wishes. We really appreciate it!!!

Much love,
Wendy, K, & VeeGee

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#20 of 93 Old 04-22-2009, 09:29 PM
 
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YAY!!!!! I'm glad she did well and they think it was a success! Hope she heals fast!
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#21 of 93 Old 04-22-2009, 09:41 PM
 
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(((Hugs.))) I hope you get a bed and a shower. And of course, that VeeGee is as comfy as she can be.
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#22 of 93 Old 04-22-2009, 10:18 PM
 
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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.
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#23 of 93 Old 04-22-2009, 10:29 PM
 
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Glad to hear everything went well! Hope you all get some rest soon.
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#24 of 93 Old 04-22-2009, 11:14 PM
 
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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
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#25 of 93 Old 04-23-2009, 11:26 AM - Thread Starter
 
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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

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#26 of 93 Old 04-23-2009, 11:37 AM
 
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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!
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#27 of 93 Old 04-23-2009, 11:52 AM
 
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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.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#28 of 93 Old 04-23-2009, 12:00 PM - Thread Starter
 
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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.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#29 of 93 Old 04-23-2009, 12:07 PM - Thread Starter
 
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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.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#30 of 93 Old 04-23-2009, 01:38 PM
 
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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.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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