Today was a relatively quiet day. Patrick slept pretty well on his own. They gave him some pain meds (first post surgery) early this morning. When we go to his room, he was more alert than we have seen him post surgery. When he realized we were there, he asked Emily to get into bed with him to cuddle, when she did, he snuggled down and took a nap. When he woke up he asked that we put his new birthday shoes on, which we did. He has been wearing shoes all day.
We spent most of the day trying to get Patrick to understand that he really is hurting, and that it was ok to say that he he was in pain. We have gone up on pain meds, but we are good with that.
This morning a physical therapist visited and wondered if we would like to get him up and standing a bit, we thought would be a good idea, but he was sleeping at the time. This afternoon after we changed dressings, and got all the medical necessities done we asked that they call PT and see if they were availiable. PT arrived and decided that we needed a better recliner, and moved things around. Then she said ok, we’ll get him out of bed and have him walk to Mom, which is a bit more than we had planned. We got him out of bed, and his feet didn’t really work, but we helped him take the 5 or so steps to mom. We got him in Emily’s lap, and he said “ouch”. Tells us that we pushed him a bit. He has spent until now in Emily’s lap mostly sleeping.
This morning during rounds (when the whole team goes from room to room to discuss the plan for the day) the surgeon that performed the transplant declared that Patrick needed a room with a window. Patrick was having a hard time knowing if it was day or night because there was no window in his room. This afternoon, right before PT came I asked about it, and they said they had a room ready we just needed to make the move. After PT was finished, we made the move to a slightly smaller room, but it has large windows (with a view of another wing of the hospital). When Patrick has been awake this afternoon he just looked out the window.
Things are fairly calm here. They have been pumping Patrick full of fluids (this keeps all the blood vessels open, and blood flowing), which has him quite puffy (swollen). All in all he is doing well remembering that is 48 hours post major surgery.
I’ve had the thought that I should answer questions that some of you might be wondering. If you have more questions please feel free to ask, we are all in this together.
First what do we know about the donor? The answer is pretty much nothing. I got out of the surgeon that they weren’t in the hospital. We have been told that sometime in the future we can try to get information, but that is up to the donors family.
How long will Patrick be in Omaha? That is a hard question to answer. We have been told that the absolute best case scenario is 6 months, but plan on somewhere around a year. I’ll be back and forth a bit, but Emily and Patrick will be in Omaha. I’ll come back to Salt Lake this week to pack and finish getting the house ready, and then I’ll drive back so we can have a car in Omaha.
One last note – Patrick will be immunosuppressed to some degree for the rest of his life. This will mean that for a time (probably even after he gets back to Salt Lake) he won’t be able to be in crowds, including church or school. This will mean that our social boy will be kept away, but that is the price to pay for getting these fancy new organs.
Thanks to everyone for the love and support. We really appreciate all the offers of help.