Family of Four:: July 2013

Be happy

After spending most of our summer thus far, and really most of Henry's life, with Henry sick... we try to live each good day fully. Even if it's for an hour, we try to have fun. Enjoy the good days, because they are often followed by three hours of screaming, steroidal grumpy Henry. We have to be careful on what we do, because Henry does have a weak immune system... no crowds, no zoos... but we do what we can, and Owen has taken the responsibility of carrying the alcohol hand sanitizer.

Yesterday, we fed the ducks

Look at those plump cheeks!

Henry is on TPN, we are literally leashed together. Where he goes, I go.

Today, we had four hours off TPN, so we jumped at the chance to go to the park. Henry is still pretty weak, two months of being sick will do that... but he sure does play as much as he can...

Henry LOVED swinging.

Owen loved the slides.

Owen is such a good big brother.

Air Show

The Make-a-Wish Foundation gave us four free tickets to the Hillsboro Airshow. So, we tried to go. We made it about two hours before both boys were done. Not bad for our first family attempt.

It was a perfect cloudy day...

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.

Final Day

Mid-vacation, we went to the emergency room in Portland for IV fluids. (Owen stayed in Seaside and went tide-pooling.) The fluids had perked Henry up, and he actually ate. But, by Friday (day five of seven) Henry looked horrible. He had a fever (again) and wouldn't eat or drink, and he was continuing to have wicked diarrhea, so... we called it quits and went home.