July

In the beginning of July, we spent a week in Seaside with the Ryersons, Brouillards, and Grandma and Grandpa. Henry didn't feel well, and dad and I were really stressed out. We tried to give you a fun vacation, but dad and I ended up going back to Portland twice with Henry. You stayed in Seaside and played with cousins. The only time Henry left the condo was to ride the carousel.

 

Henry wasn't eating, barely drinking, and was having horrible diarrhea.

When we got back from the beach, we knew we needed to back to the hospital. Henry tried to eat a bit at home, because he didn't want to go to the hospital, but dad and I knew it was where we needed to go. Henry was taken into the ICU because he was so sick. He was very malnourished, and his body was very sick. The DRESS had effected his lungs, heart, liver and GI system. Anything that we tried to feed him, he pooped out really quickly. Again, we found ourselves surrounded by many doctors, trying to figure out how to help Henry.

Henry got a new central line, a PICC line, and we were able to start giving him TPN (all the nutrition he needed through his veins). Henry slowly started to feel better.

But, the diarrhea continued. The GI doctor said that we needed to give his system a complete rest. So, for 72 hours, we didn't let him eat. He was on steroids, HUNGRY, but we didn't let him eat. We needed the diarrhea to stop. He was miserable!

But, he had moments of feeling well. I like to think he was trying to figure out how to turn up his TPN.

We spent days playing with the pump, or the bed, or my phone. And we watched Cars 2 MANY MANY times!

He finally was able to eat tiny bites of food, and his diarrhea didn't return. He needed TPN, so we learned how to give that at home. He slowly started to gain weight, so we went home.

Again, when Henry felt good, he wanted to play. You helped him learn to ride his tricycle while I walked beside him with his TPN.

It was during this last hospitalization that we learned that his immune system labs looked horrible. We were referred to go see a pediatric immunologist up in Seattle. That appointment would be in August.