Woody continues to get fat and sassy. It’s been a while since the last update, so there’s a bunch of stuff to go over. Let’s start with the medical front. Maggie went off to Chicago last weekend with some friends, and so I took last Friday off and scheduled a metric crapload of doctor appointments for various checkups. First stop was at the radiologist, where we got new images of his kidneys. I am pleased to report that Woody’s hydronephrosis has resolved itself, as has his kidney stones. The latter was expected, as he’s been off the diuretics for awhile; the more fluids you flush through the kidneys, the more deposits get left behind, basically (lasix especially is notorious for causing stones, apparently). The former is great news, considering that he’s had it since close to the beginning. Hydronephrosis is the condition by which the kidneys retain too much water, which makes them inflate and be prone to infection (it’s one of two things that put his kidneys at risk; the other being his tendency to reflux urine between bladder and kidney, a condition that I have no new update on).
Our second stop was with the pulmonologist (the lung doctor), who declared that Woody is doing very well, and moving lots of air through his lungs. He also said that his lungs sound “clear as a bell” and repeatedly stated that he’s doing about as well as one could possibly expect a 23 week micropreemie to do. I like this doctor, because he was the one who told us in early August that Woody was definitely going to need a tracheotomy, and that we should just face facts and realize that he wasn’t going to make it if we tried to do another extubation—prior to him successfully being extubated about two weeks later. Dr. K later told me the equivalent of “boy, this is DELICIOUS crow! MMM, mmm, mmm.” Which I greatly appreciated because it’s rare, in my experience, for doctors to ever make mistakes. I guess it’s a lot easier to admit a mistake if it is proven that your patient is doing far better than you thought than the reverse.
Dr. K and I talked at length about various lung issues. We are very wary this winter, as I have previously alluded, of two or three major respiratory issues. First and foremost is RSV. This is a virus that causes mild cold-like illnesses in older children and adults, but can have very serious effects on small children, especially children that have compromised lung development like Woody. There is no vaccine for RSV, but there is a prophylactic treatment known as Synagis, which is a concentrated antibody that has been shown to be fairly effective if administered once or twice a month. This product costs—get this-- $3000 a shot. Apparently most insurance companies throw a huge fit to pay for it, but to their credit ours does not. It really only makes sense, too: isn’t it better to pay $3000 once a month rather than to pay another $100,000 for a hospitalization for RSV pneumonia?
Second on the list of feared pathogens is the flu; Woody has had flu shots and so have Maggie and I. Finally is the ol’ Whooping Cough, or pertussis. Maggie and I have now had our pertussis vaccinations updated, since neither of us have had this shot since we were kids. In another thing we have learned, the pertussis is making a bit of a comeback, and is hitting adults hard, since the vaccinations wane in effectiveness over the course of your life. As you can tell, there’s a couple of different levels that we try to protect Woody on. As much as possible we keep his vaccines up to date to keep his immune system strong. Then we try to keep his caregivers vaccinated in order to provide a firewall of protection to cut off disease vectors. The final thing we do is to cut off, as much as possible, his access to anyone else. This is a hard thing to do. We generally only take him to Grandma’s house or to the doctor, and the rest of the time he’s at home. We limit his visitors to his caregivers, although we occasionally let friends see him (if they put on copious amounts of sanitizer). Being such nuts about his exposure to other people is good in the sense that it has, so far, worked (knock wood). But it also has some detrimental social effects, as we cannot even leave the house without a caregiver there to keep track of him. And it makes us seem a little antisocial and nutty to just stay at home. After talking to Doctor K, though, I feel better about keeping up this regimen: he told me that even a full-term ‘regular’ baby that gets an RSV his first winter has, according to recent research, a 700% greater chance of later developing asthma; I think it’s worth it.
The other stops on the medical tour-de-hospital last week included brief visits to the blood lab and the pediatrician, which gave him more shots. At the end of this week, the whole family feels like a group of pincushions, I think. We’ve all had some sort of shot now, and we’ll probably keep getting shot all winter to make sure we stay healthy. It’s important.
As far as looming health issues, it’s hard to say when we’ll finally get rid of the oxygen for good. He has his next long oxygen study in January, although we now have an oximeter that will let us check his levels on a spot basis, and maybe let him be off the oxygen for stretches at a time. The other thing is his huge hernias, which cause him some bad, painful constipation quite a bit. It’s hard to see him so uncomfortable and not to have much to be able to do about it.
Anyway, I’ll next update with some reports about his development as a real live baby—he’s doing a lot of smiling and eye contact and improving his head control recently, which is nice.
