2/19 9:55 pm

3:00 am.  Wretching. Vomiting. Withdrawl. Alarms are going off because his oxygen is dipping and his blood pressure is wonky and low. This poor kid. He has to vomit in a bucket. We turn the fan on. We put a cold washcloth on his head. It is not my favorite noise to wake up to by any means. But I was up and so was he.

Then, because his oxygen was dipping a little there was concern of aspiration. Did vomit go into his lungs?After the excitement of vomiting, we went back to sleep. Only to be woken up again for an X-ray to check the lungs for aspiration. Not the most restful night.

Breakfast arrived and we left it on a table off to the side, with the bucket back in front of him, while her wretched and spit. Nausea is such an awful feeling.

After the nausea passed, Ethan was able to take in some calories with ensure added to some Cheerios. The nausea came back around 10:30. Just in time for our favorite PT car guy to come in.  “How’s it going in here?” He said with a chipper voice. His eyes then fell on Ethan as he was hugging the bucket and wretching.

“Ohhhhh.......I will come back later.” He said with a sympathetic nod.

Ethan got another anti nausea medication dose.  He had me set up his play station and he was working on his spirometer exercises. This helps to exercise his lungs.

We were visited by the dietician, pulmonologist, and renal team this morning. 

Working with the dietician, I told her that Ethan’s appetite was a little better but his dinner falls short because his feeds get turned on before his dinner comes. She did a calorie count from over the past few days and determined we can give more feeds over night and leave him off his feeds longer during the day. All this record keeping is paying off. Kidney failure is hard.

At rounds, I voiced my concern with weaning the one medication that was causing the withdrawl symptoms. We all agreed it can go a little slower and I pushed to have a dose of anti nausea ready so it doesn’t have to take a half hour of him wretching before they can give him one. Last night they had to text a doctor, wait for an answer, the doctor had to write a prescription, send it to pharmacy, pharmacy had to prepare it, we had to wait for it to arrive and then give it. It doesn’t make sense when we have someone just wretching. So have it ready to go and cut out all the wait time. This plan seems more humane. I am glad the team was able to accommodate that.

Also Ethan came back hypothyroid. His thyroid just isn’t producing thyroid hormone correctly and that can cause issues with metabolism and heart rate. One of the many medications Ethan is on has a side effect of hypothyroidism. Also, sometimes the thyroid gets goofy if you have been sick for a long time. It may or may not be reversible but it is something that is very treatable and may just have been a casualty in this battle. More bloodwork was sent to look into this and we will get a recommendation from endocrinology.

Ethan was a bit bummed hearing about all the snow Rochester is getting. He won’t be able to ride his snowmobile this year. I told him maybe next year when he is feeling better we can go for a weekend somewhere and ride. Another casualty in his battle but one that we can easily overcome.

Ethan’s blood pressure continues to be low, so the dose of his new blood pressure medication was increased. It’s a vicious cycle. Give medications that are needed. Said medications have side effects, give medications to treat the side effects and those medications have side effects. Frustrating but overall these are the things he needs to have addressed.

I had a bit of a rough time getting my one load of laundry done. Now that we are at a different part of the hospital, for a parent to do laundry, they have to ride the elevator From the 11 th floor, down to the ground level, walk down a long hall into the lobby, show your visitors pass to get on the tower elevators and ride it up to the 6 th floor. THEN reverse the process on the way back. Add in all of the stops on the elevator for people to get on and off along the way, by the time I got back to my room, I had been exposed to over 30 people that I had counted. AND it’s sabbath. So one elevator down where ever you go. I refuse to fall for that elevator ride for 11 floors.

There is one laundry room for parents in the entire hospital. There are two washers and two dryers. One of the dryers has been out of service for several weeks. Parents will put in two loads of laundry but can only dry them one at a time. As you can imagine, all the parents and children accumulate laundry and this process backs up daily.

Unless you do laundry in the middle of the night, it is a bit of a shit show. When I left today it took me 10 minutes to get there. When I got there, my clothes had been washed but the dryer was occupied with a bag of wet clothes on top of it. I took my several minute journey back through this ridiculous process and wondered why there wouldn’t be two laundry rooms for a hospital of this size. One accessed by the tower elevators and one accessed by the central elevators.

So not only do I have to be away from Ethan longer, I have exposed myself to many more people, and with a transplant kid, I am uncomfortable with that. It seems that is our situation, so we will deal with it but it doesn’t make the best sense to me. And I just want to whine about it a little.

Ethan kicked some hard core ass during PT today. He did sit to stands, lots of leg and arm exercises for 30 minutes. He took a decent nap after that. Way to go kid.

Janice broke again. She went on strike for about an hour. That Janice, she is her own boss.

I also set up the play station for Ethan today so he could play for a bit. He gets sore as his muscles have to build up holding the controller.

Everyone seems nice on this floor. There are some familiar faces as Ethan’s doctors have not changed. Occasionally a nurse we know works up with us on 11. It’s nice to exchange a friendly wave. 

Ethan’s appetite wasn’t great today. But he did as well as he could. He is making thoughtful food choices. I consider it a win.

My bright spot was watching Ethan interact with the staff. He didn’t used to really talk to many people and he would often do the teenage grunt. He has matured enough to be able to have a nice conversation and it helps that he is charming. ❤️

Also, the courtyard was pretty tonight.