4/1

I woke Ethan up this morning at 9:00 am. He slowly sat up and I heated up his breakfast of waffles, sausage and bacon on the supposed “sodium restriction” diet. This makes no sense. Whatever, I am meeting with the nutritionist today. 

Ethan then got a spontaneous bloody nose. He was pissed. He gets these from time to time. I am a bit more concerned since he is anemic AND on blood thinners. It took about 30 minutes to resolve. I ended up having to reheat his breakfast. By 10:00, he was still eating breakfast with a full day of therapy ahead of him. Our family meeting started at 10:00 am. We had the “family” meeting in the room so Ethan could finish eating. 

Ethan was called, for the first time, “not that medically complicated”. I laughed. NO ONE has EVER said that. 

What they meant was that in a rehab facility, his issues aren’t nearly as bad as the other kids. Most kids are unable to walk. Wheel chairs are the norm.

We were given a time frame of being here about a month. Woo hoo. This is do-able. Ethan was hilarious at this meeting. He talks slightly slow but his stroke affected none of his brain power. He was cracking jokes throughout the meeting and making everyone laugh. They mentioned a blood draw and he told them to stick a tube up his nose because of his bloody nose.

I told the team I thought Ethan was strong enough and could benefit from more PT/OT. They are going to discuss that with the other team members and decide. They also thought he would benefit from therapies on the weekend too. 7 days a week....we are going to whip this kid into shape.

Ethan then went to Rec therapy. He told the teacher he wanted to be cautious because of his nose bleed. They played a game that he really liked. He came back just in time for Occupational therapy. He got in his wheel chair and they wheeled down the hall and his nose bleed came back. Back they came and ended up doing an hour session in his bed with modified therapy while I tried (day number 4 with trying to get Ethan’s meds situated from the pharmacy) as well as get in touch with the SSI people (day number 4 as well).

I met with the nutritionist and we discussed that it is impossible to have Ethan on a sodium restricted diet without being able to provide me a sodium count of each item on the menu. We mutually decided that it is more important for Ethan to eat protein and build muscle and gain weight than the sodium restriction.

Phew, glad that is over. The social event was rescheduled to Monday. Phew! I wasn’t feeling it. I know Ethan gets most of his social deficits from me. 

Ethan’s lunch came and we put in our order for his dinner which included whole milk. The kid is trying to ingest increased amounts of calories. They could only put in for 2 % milk because he was on a restriction of some sort with whole milk. So I had the nutritionist come back. After discussing it with her, she agreed to lift the ban on whole milk. Woo hoo.

Ethan finished eating and then we had a telehealth conference with his cardiologist in NYC. That ended just as physical therapy came in to get him. How do we do these days when we have dialysis too? Yikes.

Ethan took about a half hour longer to get back from PT. Turns out, OT grabbed him for another half hour and worked with him. He likes his therapy because they play games and it doesn’t really feel like exercise.

He got back and had a small snippet of time before dinner came. Dinner came and he ate well. He especially enjoyed the warm apple crisp since he didn’t get it last night due to his “sodium restriction”.

Before bed, Ethan challenged himself  to stand up without using handrails in the bathroom. He did it!  He freakin did it.  He knows I need him to be self sufficient when we get home. I don’t want to have to worry that he is falling or injured while I am at work.

Our bright spot today was that Ethan started to film a YouTube video. Stay tuned. He plans to chronicle his journey. I told him he may need to put a disclaimer on up and coming videos if they have graphic content. Not everyone likes blood and guts like his mom.