Hospital Stay three

We were admitted to the hospital on the 12th. We were moved to PICU on the 13th. Henry had lost over four pounds in two weeks, his electrolytes were wacky from malnutrition and diarrhea, his heart was fast, and he looked horrible. We spent four nights in PICU, while we placed a central line, started TPN and ran more and more tests trying to figure out what was happening. We saw cardiology, dermatology, infectious disease, hospitalists, intensivists, GI doctors, were conferenced with immunology doctors in Seattle. Labs were sent to Utah and Cincinnati. Henry was a mystery (again).

 

 He had moments of feeling good.

 (he looks so skinny!)

 His appetite returned, but the diarrhea didn't stop.

 We had pet therapy.

 Music therapy.

 Temp probe therapy

 Brother therapy

 But then, they made him NPO for 72 hours. The verdict that he had osmotic diarrhea, the only way to stop it was to make him stop eating. So, we gave our three year old steroids (to help with the DRESS) and put him in a tiny room and didn't let him eat. Luckily, we had Ativan and oxycodone to help. But he was still grumpy.

We could distract him with TV (specifically Cars 2 that we watched at least 4 times a day for 14 days)

 But he was still grumpy.

 He took maters into his own hands. Literally trying to change his TPN fluids.

 And played with the bed controls.

 And he loved watching stuff on my phone (thank you youtube)

 We spent two weeks in the hospital. Two, long weeks, this is what the final verdict is: 1. Henry has a "stupid immune system" quoted by infectious disease doctors. We don't know why, so we are going to see a specialist in Seattle in a few weeks. 2. He has HHV-6, a virus that can flare DRESS 3. He has DRESS, which needs steroids to fix, but steroids weaken the immune system, which causes HHV-6 to run rampant, which can cause DRESS to flare... Do you see this vicious little cycle?

But, we are home. He is doing so much better. We are continuing TPN at home for a week or two to boost his nutrition. We are waiting on more tests, and waiting to see more doctors, but we all love being home.