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.
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.