You’re going to love this update.
Today has been a very good day. I got back to the hospital to find Patrick just waking up. One of Patrick’s primary nurses who loves him and really advocates well for him was back on today, so I knew things were headed in a good direction. We did our usual morning routine, including a bath that he didn’t want to do because he hates getting up and coughing till it makes him sick. But we got through it and then Daddy said it was time to go to the playroom.
At first, Patrick was just as fearful of walking. But we got into the playroom and he saw a toy he wanted and he couldn’t describe.. So he got himself up off the floor and walked over to his dad to get it. Yup.. We are 4 weeks post-transplant and his abdominal strength should be coming back. Apparently, the pain from Saturday’s surgery is getting better, too.
We stayed in the playroom for 2 hours. Part of that time, Brian went back to the room to pack. When finally I could tell he was getting bored by the number of toys strewn on the floor (where they aren’t supposed to be) I grabbed his wagon and suggested we go for a walk. From time to time Patrick gets a card with cash in it. This week, there was a book fair downstairs so I suggested we go pick out a book. He was really excited about this! When he saw the giant dry erase book, he was sold. Letting him pay with his own money for the first time was priceless.
Then, we came back up to the room and it was time to leave to get Brian to the airport. Patrick got to take his new book and go sit at the nurses’ station. They told me they were also taking him downstairs for craft time.
So, after saying goodbye for a few weeks to my husband and best friend (hard, no matter what) I decided I had time to do a little something for me. I’d heard that the casserole from last night’s dinner at the Ronald McDonald House was amazing and decided to go get some. (Yup. It lived up to the description.) Then, I went upstairs to our room and put a bedrail and mattress protectors on Patrick’s bed so it will be ready when he gets to go there. And I headed back to the hospital.
Well, I got there at 3:05 and found that Patrick was back upstairs in the playroom. And they had already gotten him a volunteer and promised him painting. I asked if he would like for me to stay and he said that, no, he’d like his friend to himself. So I came back to the room and did some things on my computer while he played for a couple more hours.
All told, Patrick got to decorate a Santa hat, make a bracelet, make a jingle bell shaker, paint some pictures, and just generally play with toys. Then he came back to the room and was ready for some myself time and spent another hour playing with playdough.
The ward (church) called a new compassionate service leader on Sunday. She called tonight to see if she could bring me pot pie. After having stuffed myself on chicken cheese stuffing casserole at lunch (thinking dinner would be light) I am going to bed with a super full tummy. Also, she is crazy super nice. She has only been in the ward a little over a year and got leukemia and had to have a bone marrow transplant right after.. so she knows this hospital and life being sick and being new in the area and the whole shebang. She made pot pie so I could have comfort food. Patrick loved her visit, too.
After dinner, I got him up and we went for another walk, and then climbed up into bed. We called grandma to video chat until I could see his eyelids dipping. Then the nurse came in, gave him his meds, and he went off to sleep.
Today Patrick is off oxygen and doing well enough we dared to take the cannula off of his nose. He is sleeping lying flat in his bed with both oxygen saturation and heart rate perfectly normal. This is a huge comfort for me as I consider trying to decide when it is safe for him to go outpatient. Breathing while I’m sleeping, check.
The other great news is that after needing to go back on TPN for a few days because of the problems with his stoma, they put him on full feeds and turned off the TPN tonight.
So, all-in-all not a bad day.