2/21 10:10 pm

Another frustrating day of nausea and vomiting. At least the south end is moving and producing again.

I spent the morning trying to look up different medications, their side effects and trying to figure out what sparked this on Friday to start. What are we missing? It’s like a dog chasing it’s tail.  His treatments are not being effective. He has worked to hard to be feeling like this.

I met with nutrition to advocate that Ethan needs more gastric feeds if he is taking in less calories by mouth with his reduced appetite. I didn’t want him to fall behind nutritionally. It is bittersweet because the additional fluid intake will set him back for HD dialysis but he needs help in this way now. He is also down to 93#. The nutritionist came up with a plan and I checked off that box.

Ethan is sleeping almost all the time unless he wakes up to go to the bathroom or wretch/vomit. I asked for another anti nausea medication for him based on a recommendation of a friend. 

At rounds, I brought up the question “what are we missing?” What changed or is different that happened around Thursday/Friday to throw us off course? We went over the medication list, the weans and changes that were made, and came up with a diagnostic plan. Sometimes it is easier to know what’s going on, when you rule out what is NOT going on.

So we are running some tests and sending a blood culture. We have developed a plan to ward off the nausea. I also asked for them to increase the amount of zofran. I looked up the dosing and it could be a little higher for his weight. They thought this would be ok. I am hoping with these little changes and working together we can find the sweet spot to ward off upset stomach.

Ethan slept a lot but was feeling a little better and able to get up into the chair. He even did a little PT. His motivation was that he wanted to watch the Daytona 500.

We watched the race and he watched a little bit of the inside of his eyelids.

Afterward, he had many visitors from 9Tower come to see us. It was so nice to see our friends faces...or part of them as everyone is masked. It was really special how everyone interacted with Ethan. He gave out many hugs and we felt loved. 

We have bonded with all of these wonderful people during a traumatic time in our lives. They have put up with us when we weren’t our best selves. Ethan and I are forever grateful. Ethan’s face just lit up. It made his weekend.....which in turn, made my weekend. 

Ethan started to feel better with the new dose of nausea medication as well as the rescue dose. 

His feeds will be discontinued at midnight until after his biopsy, which they think will be mid to late afternoon. 

He is down to 91#.  Crazy. I am hoping this week can go a little more smoothly for him. Whatever life gives us...we are just going to continue to kick ass.

Oh yeah....Janice shit the bed......Again.....just as Ethan went to sleep. Of course she did.