⛄️12/21 5:20 pm

 There have been small adjustments to Ethan’s medications. Very small. It is like juggling with glass shards.  They are being overly cautious. Ethan is starting up on real feeds through his nasal gastric tube. It will help with how much his iv fluid intake is. Too much IV fluid intake is not ideal for the blood pressure.

Ethan has had a fever all day. It has sat around 100.6 for the last several hours.  All the cultures have been sent to make sure there is no infection. His white blood cell count is a little elevated but the same as yesterday so that’s good.

I was told that I am doing Ethan’s physical therapy more aggressively than the hospital PT team. I feel like it is a way I can help.  So I am on it. He gets his boots and brace on for 3 hours, then off for 3 hours. Before I put them on I do stretching and movement on his limbs. I do the same when I take them off. Ethan’s PT car buddy came in and worked with him a bit today and said Ethan feels limber which will help him when he goes to walk again.

Ethan is tolerating his new medicine to help with his lung pressures. I am so happy about that. That is the medication they started way under his normal dose and just are going to creep up over the next week or so. There was even talk of lifting the paralytic drug by the weekend or early next week. Wow!

The psych team came around and chatted. I am making sure I do all the things they told me to help with delirium, so when he comes off the paralytic, he might be in better shape. I had a great chat with the Psych lady about different studies that have been done regarding ways to decrease delirium.

I am hoping with these adjustments that are being made in such small increments, that it will set Ethan up for success and avoid a pulmonary hypertension crisis for the rest of his life. I hated that. 

Another day of small wins. Another day closer to Ethan and I walking out of this joint together.