Tuesday, April 22, 2014

Denver Day 2

 Day 2 began around 6:30am this morning when B woke up in his wraps ready to be changed. We quickly applied lotion and put on fresh pjs. The Dr. came by to say good morning and see how B was doing and told us we could order breakfast. B was very excited about his breakfast today. He had gluten free French toast and bacon. He LOVES pancakes, waffles and French toast. That was a nice treat for him.
Around 8am the PA came in and watched him in his bath and documented changes in his skin. She could tell a difference this morning (as could we). She also had the nurse come and do his blood draw for today and they got that all sent to the labs. Immediately after his bath he began his 1st wet wrap of the day. After he was out of his 8am wrap (that lasted 2 hours) the child psychologist came by to introduce herself and talk to us a bit. Unfortunately, B couldn't stay awake and he fell asleep right in the middle of our talk.  :) 
While B was still napping, it came time for the parent group and today's talk was about sleep problems, waking at night, chronic pain and how it hurts our sleep, and how to help him rest. This was a class I really wanted to attend, so the nurses looked after him while he napped and I left him a note in case he woke up and was alone. Fortunately, he never moved. I made it back to the room before he budged. His blood work will also be checked to make sure he is getting adequate sleep and to make sure he isn't deprived of certain nutrients that can make pain worse at night and cause aching in his joints.
After his lunch was delivered, we started soak number 2 followed by wet wraps and packed our stuff. They were really sweet and brought by items for him to pick from for a prize for doing so well. At this point he was really restless and they let us take him in mobile wet wraps to our room at the Ronald McDonald House. He enjoyed renting some movies and relaxing for awhile until the wraps were complete. I spent my time cleaning and doing some laundry. I got our bathroom bleached so that he could have his 3rd wet wrap after dinner. We decided we didn't really want the fajitas they were cooking here, so we went and picked up something so we could get out for awhile. Once we were back we looked around here at the RMH for awhile and checked out all of the common areas. This is the coolest place I have seen and feel so blessed to be staying here for the next few days. I wish we could stay in the hospital environment (because of germs, etc) but it is really nice. They even brought me some extra linens for our wraps and some nice, fluffy towels for his bath. They have been very sweet. They also gave him a handmade quilt someone hand made and a 31-bag with the RMH logo on it. We just finished bath number 3 and wet wrap 3. He will stay in this one all night long or as long as he can stand it. They had me give him something to help him sleep tonight so we will see how that goes. He has spent 16 hours in wraps in the last 2 days. Even though it is a lot...we can tell a difference in his skin. They seem to think if we can get his body to rest and calm down with the itching, maybe his IgE levels would go down enough to stop the problem with his immune system. We will see how it goes.
I am beyond exhausted and can't even fathom that we are only on day 2. I am going to hit the bed quickly because we have to be back in his hospital room by 8am. Here are some pics we took while we were exploring at the RMH:
Our view of the Mountains

Looks so cold, but it was warmer than PCB here today
Standing next to our room!

B looking out from our window

He is making Mickey ears for daddy and sissy. These paint cans came from Mickey's garage that used to be in Toon Town.

There were so many fun characters. He loved them.

"He bit me!"
B and Sully and his new quilt from RMH

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