VeeGee Update

It's been a while since I posted anything, (I've noticed that many blog posts by many bloggers begin that way, as if the multitude of readers hadn't noticed, or, rather, as if they cared). Anyhow, we are careening into summer and really looking forward to the break from school, for both VeeGee and me. I just graduated with my MFA in creative writing, have been on the job market for a while, to no avail, and have decided to go ahead and enroll in the PhD program. Partly, that's because I want to continue to delay paying back student loans, and partly because, well, I'd like to be a doctor. In response to that lovely Commerical Appeal comment section dude who suggested I was selfish to pursue education, well, face palm.

Since the last post, and the hoo-ha surrounding the health care debate, I've been reluctant to share our story any further, at least in this context. But, so many incredibly lovely friends have asked about what's going on that I thought I'd go ahead and do an update. I really appreciate, can't even express how much I appreciate, the support and love we have received from our amazing community. We're so grateful to have so many lovely friends who've been so generous to us.

There is no doubt that this life we've got is difficult. But I have no delusions or suppositions that what we experience is really all that special. People tell me all the time that we're heroes and stuff like that. I feel very strongly that this is not the case. We're people who put one foot in front of the other. And we're fortunate in ways that so many are not. That fortune is not because we are specially gifted by God because of who we are. It's simply a result of the crapshoot of life.

On the Health Front:

Hmm, where to begin? In February, we noticed a pin-sized hole in her trach stoma and I pretty much freaked. Turns out it must have been there all along. The method that the doc used to close her trach was to simply pull it out and allow it to close on its own. Typically it closes up like any other wound would. Apparently, hers didn't close completely. She has a cough of unknown origin (pulmonary/gastrointestinal, we don't know for sure). It is an extremely high-pressure cough; I can't really describe it any other way except that it sounds like she's trying to get something out of her throat. We think that the frequent retching (a result of GERD, for which we had a nissen fundoplication performed) paired with her pulmonary issues (she has "dirty lungs," whatever that means) cause the cough, and further caused the hole to get large enough for us to see it. There's a tiny whistle that we can hear when she coughs now, and we've occasionally noticed droplets of water on her neck after she drinks.

When we took her to the doc (post haste!) to see about this, it was suggested that we needed to get a handle on the cause of the cough, and try to get it under control, as repairing the trach hole would be moot, and even dangerous, if the cough causes pressure to build up in her throat. It could cause further, and more serious, injury. So, her doctor (an awesome ENT out of Vanderbilt), ordered a battery of tests, including a sleep study and a genetic study.

The sleep study revealed serious apnea, in addition to frequent waking. Also, she does not go into REM for any length of time at all. The supposition is that the apnea could be the result of the pharyngeal flap that we had last April. It has since been confirmed through a nasal endoscopy that the air pockets created by the flap are extremely small. Also shown, and this relates to speech not as much to the flap, she has no coronal closure (sorry, I really can't explain that) and minimal palatal movement. All that means is that she's hypernasal on some consonants and hyponasal on others.

So, the bad news relative to that is that there is going to have to be a "revision" of the p-flap. And what THAT means is that she will lose some of her ability to speak. At first we were pretty distraught by that information, but then we realized that this little one is going to figure out how to communicate no matter what. (She's a champ!) The surgeon thought that, maybe, taking her tonsils out would help, however it appears that her tonsils are pretty much nonexistent. SO, we're waiting to find out when he's going to schedule surgery, and hoping it will be soooooon, since the recovery for this one is going to be significant. Unfortunately, we don't have another consult appointment until June 9th. Ugh.

After that, she will have the trach stoma repaired, or, as that surgeon says, "revised." What they'll do with that is cut open a larger hole into her trachea and place another tracheotomy. Then they'll take it out and allow it to heal like it was supposed to at first. I don't really understand why they do it that way instead of just stitching it up. He's the doc though.

The genetic testing revealed that she has "extra genetic material on the long arm of her 14th chromosome." There have not been any other recorded cases of this particular anomaly, and we do not know what that means for her in terms of development potential. The doctors do think that this explains the multiple layers of disability with which she presents. One thing we do know, and we're sad about this, is that it will impact her decisions on having biological children, though we know better than anyone that children come in different ways. So, we may have the joy of extending our line through adoption once again. Of course, this is SO FAR in the future that it's almost silly to speculate about such things.

At the same time as all of this, two other things are happening. First, we are still trying to manage the retching and the, um, pooping. So, both "ends" are being addressed by still another doc, a GI. The reason this is so serious is because she's not gaining weight, hasn't gained anything in about six months. The problem is that, because she retches so severely when full, and because she can't eliminate successfully (and is therefore ALWAYS full), she's at the limit of her daily volume intake. She gets about 1000 calories a day through her g-tube, and about 100 calories a day via baby food and juice. You'd never know she's not "thriving" though, because she's a pistol and is just the funniest thing ever.

The other, probably lowest on the totem pole, is her dental issues. Because of years of almost-constant vomiting plus years of antibiotics and other meds plus severe oral aversion (making brushing a nightmare), her teeth are in BAD shape. The dentist found at least three cavities yesterday, but was unable to continue looking because, well, VeeGee kicked him in the crotch a few times. She's going to have to be put under general anasthesia to do any cleaning or fillings, and, since the only anesthesiologists that will touch her are in Nashville, we've added another long-haul doc to our list. I feel better with her being in Nashville for anything involving airway stuff anyway, so I'm kind of glad that it's worked out that there's a dentist who's already worked with our otolaryngologist who's willing to take her on.

On the Insurance Front:

We lost the appeal through TN Care, but were approved for SSI, contingent on my not taking a job (K's income bumps up against the maximum amount for qualification). We get a whopping $16/month in SSI payments, but that's the only way we can keep her TN Care. We weren't concerned about the amount, just the qualification.

So, in some sense, it's really just a stay of execution. If I'm going to work, I have to find a job where the insurance group is big enough to not be devastated by Virginia Grace's addition. I would also need to make enough where the cost of the premiums + the co-pays, not to mention the continued multiple trips to Nashville per month, would not further devastate us. Which means, I'd have to make a pretty penny.

We're really grateful for the additional time at this point, though, as she's got three major issues that need to be addressed within the next three months or so (at least two surgeries). We're just trying to take it one day at a time, clinging to each other, and feeling so blessed that she's a part of our lives.

AND THE FUN STUFF!!!

• She was voted "Most Improved Student" at her school. She doesn't like school, though.
  
• She has learned how to administer her own meds, and is trying really hard to "help" put her feeding tube in. She's very helpful.
• She is still obsessed with dinosaurs, but her new obsession is Scooby Do, which we do not allow her to watch since she has now decided that there is a "Creeper" in her closet.
  
• She's decided that she wants to be a chef when she grows up. The irony of that is so huge that I can't stop laughing. A chef who doesn't eat. Awesome.
• She's also decided that it's my birthday. Every day for the last month. I'm now seven. As long as I don't have to repeat adolescence and my twenties, that's fine with me.
• She said to me yesterday, after I told her that she needed to go try to poop, "I'm very very sorry, sweetheart. We're all out of poo poo. Maybe tomorrow. I'm very very sorry."
  
• Her favorite book, that she carries with her everywhere, is Burt Wolf's Table.

Basically, she's awesome, or, as she likes to say AWSHUM!

This cake was made of cornmeal, sprinkles, sugar, and water. And, of course, a birthday candle. It did not taste good. Yes, she is almost always clad only in her underwear.

Not so fast . . .

So, just when I thought we were not going to be putting VeeGee under general anesthesia for a while, her GI had decided that he really needs to do a suction biopsy to rule out Hirchsprung's disease. Of course I'm on it like a fly as soon as we get home and, of course it describes everything about VeeGee (chronic FTT, chronic constipation/diarrhea, weight loss . . . .). He also wants to do a scope of her esophagus to see what kind of damage is/has been done with the chronic vomiting (now just retching, of course, but she's getting more and more ick out as time passes).

I am not going to believe or really entertain this dx until/if it's made. I'm betting (hoping) that the issues are more related to the combination of her being the age she is with the temperament that she has plus low tone. But it's still just sobering to know that there are still these hurdles. It's never over. I so frequently think, "We're getting to the end of this. After this surgery, she'll just be a 'normal' kid." I've actually even felt guilty lately when I read about some of my friends who have kids with for real life threatening issues, like, it's not that bad. The tube's no big deal. She's breathing now. Not eating, but . . .

And then I'm reminded that her issues are systemic, permanent and that we may keep discovering facets of them into adulthood.

This is my little thumbs-up girl,
right after surgery this last time.
She's so AMAZING!!!!

Out Cold

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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 VeeGee 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.
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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.

Still waiting for a regular room . . . . let's hope they'll leave a light on for me and have Tom Bodett waiting with a cocktail . . .

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.

Give Blood!

So, it's been a while! VeeGee is scheduled to have surgery (pharyngeal flap/velopharyngeal sphincteroplasty) on April 22nd to correct airflow during speech. Her surgeon (the amazing Dr. Kevin Kelly) has ordered type-specific blood. VeeGee's blood type is O-negative. K, fortunately, can give because that's his type, but I can't. :( If you are interested in helping us out with a donation, please let me know.

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 . .

What Day Is It Again?

Well, it's been a pretty good day. VeeGee is extremely cabin feverish, but not so regular feverish, so that's good (and not so good). She's so ready to get out of here, and I think we'll be doing just that sometime tomorrow! Yeeehaa!! It's pretty late, and she's still not asleep so I'm going to play possum for a bit in hopes that she'll go to sleep and let me work for a moment or two (not able to get much of anything done here in the hospital with so many interruptions and, oh, the crying baby and all ........). Much love to everyone - I hope to see you all soon. Wendy & VeeGee

Happy Saturday

Happy Saturday! I hear there were some lovely storms yesterday in Memphis, but that today is beautiful. I'm glad. It's nice here (we have a lovely view of building tops!).

VeeGee really well last night, but continued to run a fever through the night, even with the Tylenol. I think partly because the palate is closed and partly because she's sleeping with her mouth open, but she is snoring like crazy!!! It makes me think about my great grandmother and grandmother - the champion snorers of all time! I think VeeGee have given them a run for their money if she'd had the chance. Her doctor was in this morning and said that her palate was looking good, but that she was a little concerned about the fever (not too much). She had thought we might get to go home this weekend, but it looks like we'll be here at least another day or so, which was really the original estimate. We were just hopeful because we don't have to wait for her to start eating (we'd be here a good long while if we had to do that, I'm afraid!) because of her g-tube. Oh well. We had some good play time this morning and a nice bubble bath. I got some grainy pictures from my laptop cam that I'm posting here in a minute. Say prayers for VeeGee that the fever will break and the pain will begin to lessen. She's so brave and funny, you'd all be so proud of her. Thanks for loving us. Wendy & VeeGee

Night in ICU

Today's been a roller coaster! Nights in ICU are not like those in a regular room. There's lots of light and beeping - full windows on all sides. VeeGee is connected to lots of wires, and for whatever reason the leads monitoring her heart are adult-sized, so they're pretty uncomfortable. She's also on a pulse-ox monitor, an IV tube and her feeding tube - in all, seven tubes/wires, bless her heart! As usual she's a firecracker and a champ! What an awesome personality - I'm so proud of her. We had fun playing and talking with Daddy on the phone this morning. Soon enough, she'll be able to pronounce the "d" sound and will stop saying "ah-ee" for "daddy." I think we'll kind of miss that. The doctor came in around eleven and said that she was looking great. Again, because of her feeding tube (!!!!), she may be able to come home much sooner than they had originally told us - maybe even this weekend. One concern, though. Once they backed off of the Tylenol from every 4 hours to every 6, she started running a fever. There are a couple of possible reasons for this. First, it could be because she was particularly angry at the time that we took her temp., and second, it could be that the Tylenol had just been keeping the fever at bay. I'm a bit inclined, unfortunately, to think it's the latter in this case since VeeGee generally runs a low temp (around 96, usually), and so any fever is actually more of a fever than it would be for other kiddos. Also, she just had a fevered look in her eyes. After the Tylenol, though, she's back to her "fair-to-midland" self. So, we'll just cross our fingers. BTW - we are about to be (finally) transferred to a regular room. YAY!!!!!

ICkeyU

First night in ICU went relatively smoothly. VeeGee is truly a redhead, and that fact is FREQUENTLY noted by all who try to touch her! She's not a big fan of, well, pretty much any of the things attached to her. The one that seems to freak her out the most is kind of interesting

to me. The pulse-ox monitor is attached to her finger with a little band-aid looking thing and it has a little red light that puts me in mind of E.T. Well, she really, really hates it. Always has. I feel for her, I want to convince her how really cool it actually looks. We've gotten a good look at her mouth now. It's pretty interesting looking. I'm glad that the doctor warned me. It looks like there's a second tongue in there! The palate that he create has not completely adhered yet - that'll take a few days - so it really looks like a tongue up there. There's a fair amount of bleeding and her face/eyes/lips/tongue are all pretty swollen. Still, she's as pretty as a picture. We're hoping to be in a regular room by this evening. As always, thanks for your sweet notes, and your prayers.

She's Out!

Well, well, prayers, good wishes, and ordering food (true to restaurant worker tradition) seemed to work wonders y'all! The surgery only took an hour and a half!!! And it was a HUGE success!!!!

!!!!!!!!!!!! K had gone to get something to eat at what we thought was the (safe) halfway point, and they called our names - I couldn't believe it. The doctor was so, so pleased. There was enough tissue there to create an entirely new palate (soft and hard) and they did not have to do a pharyngeal flap. Yahoooooooo. He said it will look like she has two tongues for a few days (ick!), but that will heal fairly quickly. She'll be in recovery for about another hour before we can go see her, and then she'll spend the night in ICU. The doctor said that she'd then stay in a regular room for five to seven days (I'm hoping for less, though, because of her feeding tube which will help to prevent dehydration - cross your fingers!). I'll sign off for now.

There She Goes!

VeeGee finally just went in to surgery at 1:00. Dr. Kelly said that it should take about three and half hours or so. They won't know exactly what they're going to do until they get in there and see the cleft up close (without the wiggles). There is a strong possibility

that they will have to do a pharyngeal flap . The good thing about that possibility is that that procedure will reduce the nasality of her voice (nasality is a common result of cleft palate). She had a pretty tough morning, as she's getting her two-year molars and has a heinous diaper rash and didn't get to sleep until midnight last night since our CONFIRMED reservations at our hotel were canceled. We were sent to a totally gross hotel with no space for her. Poor thing. Anyhow, I'll update when she's out of surgery. She'll be going to ICU after recovery. Thanks for the prayers and good wishes!

Cleft Palate Fissures & Vandy Visit

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Well, I'm excited and nervous and totally fried. VeeGee and I have been at Vandy for the past two days. We have seen six doctors (craniofacial surgeon, allergist, GI, pulmonologist, and the GI surgeon), had allergy bloodwork (bless her heart), X-Rays, and, ahem, an enema. I have NEVER seen ANYONE suffer like my baby girl suffered after the enema (saline). She screamed for forty five minutes straight, forehead flat against the wall, tiny fingers clenched, teeth clenched, And then she crawled into my lap and pooped 9 days worth of poop all over herself, and me. Pretty crazy. And THEN, we had to go have four vials of blood drawn. Naked. Well , her, not me.

So, the craniofacial surgeon, god bless him, scheduled cleft palate repair for the 30th OF THIS MONTH!!!!!!!!!!!!!!!!!!! "Our Other Doc," Dr. W*#@*&^, was going to wait until she was AT LEAST four. Meanwhile, she continues to be unable to eat, to speak (and be understood by anyone but me), to have repeated sinus infections ear infections, blah, blah, blah.

Anyway, Other Doc fired, Vandy dude rocks.

There are concerns, though, about the repair. It will be the second attempt. The first attempt was when she was 6 months or so (before she came to live with us) and there were serious fissures (like so serious that every doctor who has looked at it as recoiled in shock, that is, every doc except Dr. W*#@*&^, who, apparently has NEVER ACTUALLY LOOKED). So the primary concern is that there might not be enough tissue to make the repair without further fissure(s). The other options, as I understand them, are to pull tissue from the cheek and/or a pharyngeal flap. This doc does not think a tongue flap is a choice for VeeGee b/c she's too young to tolerate it. Same reason not to do an obturator.

Trach's Out!!!!!!!!!!!
Dr. G. removed it at 8:30 this morning. And she's doing really great.

It's Actually Happening!

I'm starting to get excited now! VeeGee for almost three hours and her sats never dropped below 96%!!!!!! This is really, really great news. She's just singing and dancing - what a super champ! If only we had a drumset in the hospital room, everything would be perfect.

Update

All! A is doing very well. We're figuring out the new feeding schedule, which is pretty much just 24 hours a day. Hopefully, her stomach will start to process more and more quickly soon. She seems to be in less and less pain and is not having to take any prescription-strength painkillers. That's a relief. We have, however, had to re-start most of her reflux meds. Hopefully, this will be temporary, but, still, it's better than it was before the surgery, and we're very grateful for that. The washing machine has seen a lot less action since we got home since there's not as much vomit-soaked laundry! Yahoo!!! AND, we have a date scheduled for trach removal! She and I will be traveling to Nashville again to have the trach taken out on February 11th. I am SO excited about this and really looking forward to the changes it will afford our sweet girl. I can't wait to really hear her voice.