Reluctant Poster

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I've been reluctant to post since we got in here because it's been such a roller coaster and I kind of go from feeling whiny to giddy within hours. I really thought we were going home today, had my bags packed and everything. And then the doctor tells me it's going to be at the earliest Thursday before we'll go. I'm so sad, and at the same time kind of relieved. I had been worrying that she wasn't doing so great, but I am sometimes a glass half full kind of person (as much as I try not to be), and so I had pretty much decided that I was blowing things out of proportion.

As of tonight, I'm really glad we're here. She's developed a fever higher than she's ever run and she's been incredibly lethargic all day long. When she's been awake, she's mostly been laying down, and when she's sat up at all it's only been for a short time, like half an hour. I'm trying really hard not to start freaking out. I hear from so many moms whose kids have gone through these things. It's just part of the process. But it's really a challenge to balance my intellectual understanding of that process against the fever listlessness of my little girl. I hate seeing her this way. So cliche, I know.

In the midst of all this I have friends whose kids are going through things far more life threatening, or at least more definitely and imminently life threatening. And they're so generous with their support of VeeGee and me. Truly amazing.

Being in this room, which, fortunately is pretty opulent by hospital standards, is incredibly surreal. I mean, I've heard that it's hot outside, that rain is coming, and yet I haven't been out there. That's so very strange to me.

And these people, the nurses and other staff, come and go and have stuff going on outside of this place that's everything, my world, right now. I guess that seems rather trite to be thinking about, but all of these nurses, or most anyway, are these young cute vivacious girls, mostly, probably more than a decade younger than me. K and I were talking about how weird that is, that these girls are caring for our daughter are about the age we were when we first started dating. And god bless america, I wouldn't have trusted either one of us with a kid's life, like really her life!, for a million dollars. 'Course in our collective hubris (which was amusingly and embarrassingly HUGE) we probably would take umbrage at any suggestion that we were ill fitted to do anything.

And on that lovely reflective note . . . good night.

One More Night

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We had a bit of a rough night. VeeGee'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. :-( One of the things that I do love about her doctor is that he's pretty cautious.

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.

Her pain management seems to be pretty good. She's getting morphine every two hours and tylenol with codeine every six. Her blood pressure is running a little bit high, but I really think that's because having it taken pisses her off so much. And, of course!!!! Who wants that kind of "hug?"

I'll update if anything happens, but probably we'll just be watching monitors for a while.

One bright spot, we brought our own coffeemaker, so we'll at least get to feel sort of sane SOOON.

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She's Out with A Pout!!!

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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,
VeeGeesMommy, K, & VeeGee

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T-Minus 44 Hours

In forty eight hours, VeeGee will likely be in the recovery room waking up from surgery. I had to take her to the doctor this 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. And 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!

Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.

I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.

Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at other children with the same disability profiles and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).

I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.

Velopharyngeal sphincter reconstruction for VPI/VPD

We had our (I say "our" which is kind of funny, huh?!) nasal endoscopy yesterday (she was such a CHAMP!!!!!!). They found that VeeGee has an enlarged adenoidal pad, which actually works in her favor, strangely, because she is not closing the gap at all. Her soft palate is raising a bit, but the muscles to either side (I can't find the name for them anywhere) are not moving at all. SO, she is not going to be a good candidate for a pharyngeal flap because that would still leave gaps on either side of the flap. The SLP suggested a sphincteroplasty instead. Problem is, that would require removal of her adenoids, which are currently helping her.

I'm not finding much info on it at all. We're supposed to be meeting with the plastic surgeon again on Monday (ANOTHER 3 hour drive to Nashville) and I'm wondering if that's really going to be necessary since he's the flap guy and our other ENT/Otolaryngologist is the sphincteroplasty guy.

I hate the idea of another surgery, but, at the same time I do want to keep pushing ahead with the things that are going to increase her speech abilities. Also, I'm uncertain about our future insofar as jobs/insurance/location go and I'd really like to take care of as many things as I can as soon as is feasible/desirable in case we don't have access to these doctors and this hospital that we love so much in the future.

Okay, that was a total ramble . .