Doc guest post
So apparently the milrinone allergy is unbelievable. Literally. An attending that we love that has been gone for a while was there for night rounds and heard about his reaction and was flabbergasted. Quote: "No no, I believe that it happened, just...milrinone? We've given that to like 800,000 people...we use that stuff like water!" So that's fun.
For actual update stuff, he is doing well today. He went longer on the breathe-by-yourself mode today than he has done before. This will likely be even better when he gets some more blood (he was a little low again). His chest tube is still draining some but not anything like before. We still won't know for sure if surgery was successful until he gets back up to full feeds. He is actually halfway there as of a few hours ago and will be up to full by the morning if things keep progressing. And big news: his pancreas works well enough that he won't need to take enzymes with his food! This was expected with the mutations that he has, but it was not definite until today. This doesn't mean that he will never need enzymes, but it might be a long time if ever.
We actually didn't even get to the hospital until about 3 PM today, as we needed to do laundry (it took 5 hours to do two loads because of the washer/dryer being used by staff and the dryer taking forever to dry things) and what started off as a simple oil change turned in to me getting two new tires for the Versa.
I also learned today that I have been calling a different number than the main CICU number. When I called to ask about Rowan this morning the person said "Well, this is Dr. ... I can give you an update" Would I like to get the update directly from the attending? I would love to!
MID-POST UPDATE:
Um, maybe it's not a milrinone allergy? They started him back on Nipride, which he was on last night, and the splotchy rash came back, though this was an hour and a half after. Fan-stinking-tastic. He is getting some benadryl and some confused looks from the docs as to what he is doing now...
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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