2023-1-12 Dex is released from hospital

Dean flew to Detroit on Tuesday, January 10.  I had been staying at Amanda's house up till Dean got here.  Mike's dad Kurt was also in town, and staying at Mike and Amanda's, so Dean and I started staying at our house, and just driving down to Ann Arbor to visit or help with kids.

Its so beautiful here, but stinking cold!

We have done lots of puzzles, had game night with our friends, and we go on lots of walks around the neighborhood.  I wish we were out here for different reasons, but we are making the most of our time in Michigan.  We weren't planning to spend any of the winter here!

So here is the Dex update:

On Wednesday, Jan 11, the Dr's decided to stop the nutrients that were going through the picc line.  The picc line was causing problems, and Dex was starting to eat food.  If Dex could tolerated food, and his blood sugar was in the acceptable levels, they would take out the picc line.  As far as I know, that was the only thing that was keeping Dex in the hospital.  Dex did great.  So Thursday, at 11:00 am the line was removed, and Dex left the hospital!

He was still very weak and unstable.  His right arm still had pain from the blood clot, so he kept that arm close to his body.  He kind of looked like an old man walking gingerly around the house.

That evening, Dex got a fever, had pain in his abdomen, elevated heart rate,  and was having diarrhea.   Mike and Amanda called the hospital to see if he needed to go back.  They all decided to wait, and watch how Dex progressed.  The U of M medical center is 8 minutes from their house, which is a real blessing.

Dex did alright through the night.  His fever went away, and the heart rate came down, not to normal for Dex, but it did improve.

I'm writing this on Monday, and the report from Amanda is Dex has less pain, and no diarrhea.

Dean and I have flights booked to return to Utah on Wednesday morning.  

We will see if both of us get on the flight, or if I need to stay to help.

1-9-2023 Finally some great news on Dex!

We got a Marco Polo this morning of Dex telling us he got his NG tube removed!

It was the cutest, happiest video.  Amazing morning!

When the doctors suggested that the tube could be removed, Dex was hesitant.  He has hated that tube from the very beginning.  Apparently it's super uncomfortable, it makes it so he can't eat or drink, and it also represents that he is not well.  He also knows that if his body isn't ready, and they remove it too soon, there is a possibility that it would have to be reinstalled.  I'm not sure how the conversation went, but the tube came out!

This is one happy kiddo!  Haven't seen a smile like this for a long time!

Dex is super skinny, and very weak.  He has physical therapy this afternoon.

We are all so excited!

Today is the first day since I've been here that the sun came out.  Dean had texted me yesterday telling me it was in the forcast to have sunshine today.  It happened, the mood and the skies aren't gloomy here today!

This is totally worth having its own blog post!

Update:

Later that night, we did have a little hiccup.  Dex had pain in his arm, which turned out to be a blood clot.  After having an ultrasound, it was discovered that it was a superficial vein thrombosis, which means it wouldn't travel anywhere that would cause harm.  Dr stopped TPN (nutrition) until they resolved that clot issue.    Dex was really discouraged about the setback.  It seems like he has had setback after setback.

TPN was started again, and the Dr approved clear liquids for Dex.

 In the morning, Dex had been cleared to have solid food!  Nobody was expecting that.  Dex had pancakes for breakfast, and was able to tolerate it!  For lunch, he had noodles and was able to poop!  Things are looking good....again.