A Plan

The good news is, the doctors have come up with a plan for Henry. Unfortunately, it means he will not get to go home before his next surgery.

On Thursday, I was able to have some good conversations with our PACT nurse and with the PICU attending doctor. The doctors had begun talking about sending us back up to the floor next week, but I still had a nagging feeling. My underlying question was: if his echos, vitals, labs, and even weight are all not substantially different from where they were when we came back down three weeks ago, why? Why did we come down, and why are we OK to go back up?

Since his cath on Wednesday, several members of the team have been talking, with us and with each other, about what Henry's options are. Ultimately, for him to have the Glenn procedure, his body needs to grow bigger and older. The doctors poured over all of Henry's info from, well, his whole life. They feel like there are two things we can do to give him the best chance. First, we are going back on milrinone. His echos and weight gain were moderately better while he was on the milrinone than on the enalapril and digoxin. This means we are hooking back up the IV. Secondly, we are only going to feed him by mouth every other feeding. The other half of his feeds will be completely through his NG tube. This should help him conserve some energy and use that it grow.

Because the milrinone is an IV medication, that will keep him from going home. Once the doctors feel they have found the best level for this, and aren't having to adjust it up or down, then we will at least be able to move up to the floor, and hopefully remain up there until his next surgery. It is far too early to know when that surgery will happen, but if he grows well under this plan, we can look to do it as early as possible. The surgeons will not typically do the second procedure until four months of age, and we hope Henry will not have any urgent complications that would necessitate the surgery before four months. If all goes well, he might get the next surgery in early May.

This is certainly not what we were hoping to hear, but it is what Henry needs. He is otherwise doing well. He is comfortable, not in any pain or distress. He is curious, looking around at all the lights - when he is awake. He seems to have his days and nights a little mixed up right now, but that might be his father's fault as much as the hospital's. We are grateful that he is not having any major issues that would require more invasive treatments and we are appreciative of the kind and helpful nurses and doctors. And thank you, for thinking of our little family.