Patrick is doing better, but is not out of the woods. Friday, his hemoglobin was low, so he received one unit of blood. Saturday, he spiked a fever and attempted to extubate himself, popping out of the restraints, while on heavy doses of morphine and versed. Sunday, his hemoglobin was low again, and he received another transfusion. Imaging did not reveal any internal bleeding, so they think it is simply a product of the changes in fluid level from the diuretics inflating and deflating the numbers. His number today looked good.
They have weaned him off the IV morphine and dexmed (dexmedetomidine--a sedation drug) and extubated him from the vent. They had gotten by on Tylenol most of today, but he was quite agitated this evening, so he got a single dose of morphine and he finally was able to get some rest. He's currently on 5L/50% high-flow oxygen through a nasal cannula and his sats have been high 80s to mid-90s. His heart rate is running in the 120s, although it has gotten to the 140s when he is agitated. He's still on .75 of milrinone (the drug that helps his cardiac output). He had an echo today, and the pressures were reduced, although still quite high--he went from 90% to 75%. It is possible that the numbers will continue to go down; we just don't know. The surgeon was still in surgery at the time of rounds this evening, so he will likely see the echo in the morning and make decisions then. One thing they could do to help the pressure is make a larger hole in the VSD patch they placed, which would create a kind of pressure-relief valve, but it would reduce his oxygen sats, and there's only so big they can go. So it's something, but not a cure-all. In addition, there is disagreement about whether pulmonary hypertension meds like Mira takes would do him any good. If they won't help, it's one less tool we have in our tool box. However, we also found out that if we can get his pressures into a more moderate range, the heart can, over time, reduce the dilation and fix itself to some degree. This is a nice surprise, as I was under the impression that the damage caused by the high pressure was irreversible even this early in the game. It's nice to be wrong about that.
Although we are not to this point yet, one of the questions I have begun struggling with is when to say when. In the event that we cannot get his pressures under control, we have no idea how long his heart can sustain itself at those high pressures. There are simply too many variables to even make an educated guess. Then, he would require a transplant (heart and lung because a healthy heart could not function in his weird system). Assuming we won the lotto, and such a thing became available, we would get roughly 5-10 years. In light of all he has been through for the last 8 months, would it be kinder to just love him and let him go, or take the 5-10 years knowing he will likely never know more than that and that it will be full of more medical procedures and visits. Is it worth all of that, just to prolong the inevitable? How does one weigh those options? I have no answers. I have only begun struggling with the ideas. Some have suggested that I am borrowing troubles I do not yet have, but, I believe it is better to start now because, should we reach that point, there may not be much time in which to contemplate these questions, and I would like to make these decisions as unhurried and unrushed as possible. So, it's in the back of my mind--percolating.
On a more positive note, he started back on feeds today. It is very slow--10mls per hour, 24 calorie (unfortified) milk, but it should cut the hunger cravings a bit. His weight is below what it was when he went into the hospital over a month ago, but given everything he has been through, he still looks pretty good. And, he's definitely feeling better because I got some smiles today!! So, here's your daily dose of adorable:
