Medically, today was very uneventful. I can’t remember Patrick every being so low maintenance when in the hospital. He has his TPN that runs over 24 hours (at half the rate it was running before). He has some replacement fluids, which are about 1% of what he was needing before. Then an antiviral that goes in his IV. All the rest, his anti-rejection medications, his acid reducers, his pain medicine.. they all just go in his g-tube. Other than the pain medicine, he only has things scheduled every 12 hours. I swear I was told that medications were going to be more complicated than this. We must not be to final doses yet or something.
Anyway, the team came around this morning and so far, he’s still doing great. They left his g-tube clamped all day, instead of to drain. And that was ok (for the first time in ever.) They also wrote orders for Patrick to start taking clear liquids. He was so excited when I brought him a cup of water after days of begging for one. He even got to eat dinner with us.
Otherwise, he alternated between playing in his wagon and sleeping. He slept till 8 a.m. He took a 3 hour nap. After a week of sleep deprivation in the PICU, a nice, quiet dark room was just what he needed to finally rest. And a comfy wagon and access to lots of new toys sent as birthday presents back with Brian were just the right incentive to walk from his bed and sit up just a little more for a while.
Have I mentioned that Patrick has me read and then studies carefully every single card we receive. And thanks to all the cards, banners and gifts, his hospital room already looks quite homey and comfortable.
For Brian and myself, today was moving day. We checked out of the room we’ve been staying in on hospital property and moved to the Ronald McDonald House. Even though it’s a bit farther from the hospital, walking in felt just like home.
After moving our luggage upstairs, we made a stop at a grocery store. I have never bought so much pre-prepared food in my life. However, it just make so much more sense to do this than to keep paying crazy high prices to eat in the hospital’s cafeteria. What we spent today would have covered maybe 3 or 4 meals at cafeteria prices. We’ve got a fridge in Patrick’s hospital room and there’s a mini kitchen on the unit, so it is easy to keep food there.
I was also very excited to discover that the grocery store closest to the hospital happens to have a moderately sized allergy friendly food section, including some of Patrick’s favorite safe foods.
And, well, that’s it. Brian is taking the night at the hospital tonight. I’ve come back to the Ronald McDonald House to unpack, do some laundry and have a night off. Patrick is so happy to have his Daddy back. So am I.
Patrick Hoopes 