Prince of Tides

Woody can eat, poop, grow, process wastes, shrug off (or at least not seem to be bothered by) aortic clots, dodge infections, and get well enough to get all of his pokes out, but he cannot seem to make much positive movement on his vent settings. This morning the doctors attempted to wean down his tidal pressure (my annotated picture taken on day 19 can acquaint you with what the stats mean) but the blood gas tests taken a couple of hours later revealed that, once again, he was not tolerating the change, and in fact, required an increase of pressure to maintain his pH and CO₂ concentrations. I have lost count of how many times we have tried to adjust down his required pressures with no success to date. It is frustrating.

However, even in the area of his lungs, Woody does have a couple of glimmers of progress. First, the amount of oxygen that is required to maintain his saturation is slowly trending down; as you will note in today's vent settings picture, his O₂ concentration is down to 43% (he's averaging a little higher than that) versus the 52% in the May 30 picture (and that was about average then). Second, Woody got an x-ray today, and it shows definite progress in terms of the haze. Now, I don't want to oversell this, because he is a chronic lung disease baby for sure, and his lungs are still very hazy, but the doctors are happy because for the first time in a while they can clearly make out the outlines of his heart on the film. Before, his lungs were so white that you couldn't make out any such details. Maggie and I are very, uh, heartened by this.

Woody is also doing very well in just about every other facet of his care. He's just shy of two pounds, he's about three inches longer than when he was born, and he continues to process food very well. His followups on the aortic clot show that it is not getting any worse and still does not block any flow, which we are very happy about.

I will take just a moment to preview the medium term picture for him. The overall plan is to keep getting food into him, growing his tissue and putting on fat, and generally trying to do whatever we can to get him to heal and get stronger. He should be able to build lung tissue in such a fashion that his tidal pressure and oxygen requirements gradually get lower, at which point we will pull the ventilator tube and put him on a CPAP machine, which works as a breathing assist (NB-- preemies use a tiny version of the same thing that major snorers and apnea sufferers use at night). After that, he may need an oxygen cannula to assist him in absorbing enough oxygen, and if he is not off of supplemental oxygen by around week 36 (gestational-- that would be around August 9) the care guidelines say we likely will be taking him home with some supplemental oxygen.

Around July 1, he will get his first eye exam. Micropreemies, especially the sort that require heavy oxygen support, are at high risk for developing a few eye problems, like Retinopathy of Prematurity (ROP), the condition that made Stevie Wonder blind. Most preemies nowadays aren't rendered blind by this, but a sizable amount have various problems ranging from needing laser surgery to patching to correct "lazy eye" to corrective lenses. My take on this is that considering all the things I've been worried about for him, I will gladly take some eye issues. No big deal.

Obviously, the lung issues will persist into his early childhood and possibly beyond. We will have to be somewhat germophobic when we bring him home, so do not be offended if we seem a little crazy this winter, especially around small kids (I'm looking your way, cousin Leo). But again, this is not that big a deal compared to what could have been the case.

I would like to see him come home by sometime around his due date, which will be around September 9 (Granddad Hobbs' birthday). September 12 is Grandma Stiffler's birthday, and I'm sure she wouldn't mind being upstaged... a little bit.

** Continued commentary on "phlegm balls". Auntie Krista engaged her hotshot doctor boyfriend Matt in a fruitless effort to prove me wrong. He executed a search to see if "phlegm balls" is in any medical literature. The results were mixed: while this exact phrase was not found, I am pleased to report that he found at least one report that mentions "horking up balls of phlegm". I must note for the record that I made no claims as to a medical condition known as "phlegm balls". I consider Matt's research a win for the side of right. Well, me, anyway. And now for the debate as to the proper use of the term of art "to hork".