Working for a living

Alistair had another busy day. He had so many people in his room off and on all day long. When a doctor rounds on him from a different department, they bring with them residents, fellows, medical students, etc. So it is always an entourage, hardly a single person. Alistair has really begun to take notice of the groups and takes it all in. If the conversation can't or shouldn't include Alistair, we have asked people to take it outside his room as he is clearly listening! If it can include him, we ask people to speak TO Alistair and not talk about him in front of him. He may not be able to participate in the conversation, but he sure can be treated like he can!

He had a great sleeping night again last night. He just needs to sleep and sleep and sleep. The more quality REM sleep he can get, the better. We took our time to get in this morning as we wanted to make sure he got to sleep in. When we arrived, he was getting his daily morning routine going. He was about to brush his teeth, so I jumped in to help. He began by himself and then I helped him to finish. Then we got him back into bed and I helped him get dressed for the day. He asked me to watch television and I asked him if he wanted a show or a movie. He told me show. I am sure he was trying to tell me which show, but I have yet to master lip reading (none of us have) and it makes it very frustrating - mostly for Alistair. Once he got settled into his show, then we had the revolving door of specialists and having to turn off the TV to get his undivided attention. Some examined him, others worked with him.

Alistair had a visit from Baxter, the pet therapist, this evening. Though he wouldn't completely open his eyes and wake-up, Alistair seems to enjoy having the canine company and reached out to hold on to Baxter's paw. 

At the same time this was all happening, my amazing husband was attempting to move heaven and earth, along with his awesome friends and co-workers to try to get Alistair transferred to Seattle Children's. Thanks to Chris Martin and Brenda Nelson at Airlift Northwest, we were going to have a fight home tomorrow. That is not going to workout due to some minor complications. But there is another option to hop on an airplane returning from New York, called a dead leg as there is no planned patient. This is all dependent on timing on all ends. Not only were Airlift Northwest, UMP/Regence Blue Shield and our friends in high places helpful and willing to move quickly, but the teams we have been dealing with at Mayo were SO helpful in getting things rolling in a quick manner. They truly care about Alistair and have his best interest at heart. Everyone is on the same page that Alistair would have the most successful rehab experience at Seattle Children's where he is near his home and where his friends and family can come visit him and motivate him to get better.

This all was postponed this evening when we saw Dr. Dearani. Alistair's incision has a small, 1/4" spot where it isn't healing and is weeping. It could be nothing, but he doesn't feel comfortable discharging Alistair to Seattle without making sure it is indeed nothing. If it is something, he wants to take care of it and get it heading in the right direction before he is transferred. So tomorrow he will be re-intubated and slightly medicated to go to the OR so Dr. Dearani can get a good look at his incision. He thinks it needs to be cleaned out, reclosed and have another woundvac placed. Since Alistair is going to be sedated and intubated, they made the decision to go ahead with the MRI and collect all the pieces to the puzzle so we have a clear picture of what is going on.

At this point, it is just par for the course. Nothing can be easy. I don't mean that in a "whoa is me" kind of way, but more of a general fact. We just can't seem to have anything be face value, straight forward or routine. At this point I feel like a skeptic, waiting for the other shoe to drop. I am not losing my optimistic outlook, but it so tiring to constantly readjust my expectations and to find the silver lining. But I am still finding the silver lining...and that is a good thing.