Doc guest post:
So...apparently sometime in the last 24 hours Rowan's NJ became an NG (basically his feeding tube changed positions, you can refer back a few posts for the explanations of NJ/NG). So maybe his weirdness last night/today was because of that. They are going to go ahead and try feeding as an NG (this was gonna be the next step anyway). He decided to have a fever overnight, so there was a big redraw of lab work and a chest x-ray, which then led to an ultrasound of his chest to make sure that there wasn't any fluid in his chest. He is fine. There is nothing wrong with him. But because of all of this, it is possible we won't get to come home quite yet. We are hoping that when nothing bad happens through tomorrow morning that they will decide he is fine and go through with discharging him Thursday as previously planned.
Not really much else to report, our little man is slowly coming off of three different medications. One of these is morphine and is the only one he actually has trouble with weaning. He is a little fussy right before his next dose and gets kinda sweaty/hot. Because they check his vitals at the same time this medicine is due, so we are going with he is just withdrawing. Yes, you can have a fever with withdrawal. Withdrawal sucks. It can cause all kinds of weird things. Which means he is going to get worked up for things despite it likely being medication related. With a kid with CHD and Cystic Fibrosis, you have to be cautious. That very much sucks from a parental standpoint.
By the way, special thanks to our good friend Alex Jech for dropping me off at the airport yesterday morning. He and Katie have their own newborn to take care of and it was really great of him to take the time and lose the sleep. If only I hadn't forgotten to give him the car keys (it was 4:30 AM and I only slept about two hours, so I am not terribly mad at myself for that, lol). So if anybody wants to get car keys from our house, go to their house, and then drive our car back to our house, that would be spectacular.
Almost there...almost there...
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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