Yesterday in our Care Conference, we had mentioned the possibility of getting Alistair stepped down to a different room for a change of scenery. This morning we got the green light to get him moved to a different room across the hall, not in ICU. We had our usual morning of the cast of characters parading through our room. Alistair was wide awake, alert and talking to us this morning. Cardiology came in and checked him out and listened to his heart. I asked Alistair if HE wanted to listen as Dr. Lewin has let him do this in the past. He said, "yes, please." So he did, and then I did. His heart sounds so different to me than before! All the docs came by and checked him out and then Judy and his nurse got his room packed up and heading down the hall.
While they were doing that, Seth and I were speaking with Neurology about the MRI results. The results didn't show anything that we didn't already know. He has a brain injury caused by his cardiac arrest that has affected his motor functions and speech, causes him tremors that will subside over time and though his cognitive function might be a bit slow right now, it is virtually unaffected. He will require intense inpatient rehab that will help him get back to pre-op Alistair.
Alistair's new room is quieter, except for the alarms that they can manage to cull in ICU, but won't in his room. He is an Ebstein's patient with a Glenn repair who now has an occasional irregular heart rhythm and his alarm goes off everyone couple of minutes...and they don't do anything about the alarm except note it, maybe. Between that and his infusion pumps, it isn't much quieter. The other thing nobody seemed to point out to us while we were pushing for Alistair to move was that he would be 2 to 1 nursing but that he can't push nurse buttons by himself if he needed help, so one of us basically needs to be with him all the time. Grandma is staying with him tonight, he cannot be alone at night. Except for those 2 nights last weekend, we have not been staying with him as he has been sleeping well at night and we didn't want to be disruptive. Plus we need to sleep too! Not that we mind being with him, but this is a HUGE thing someone should have pointed out. We have very good channels of communication and have let it be known that we would like someone to let us know if things are a bad idea. The hand off was clunky and everyone admitted it didn't go well. Change is hard and we have been used to the same thing for 13 days, but we went to somewhere where we suddenly felt like we needed to protect him and not just be with him. Alistair is not in danger, but the communication and effort to read charts with the new staff is lacking and therefore we have to educate them on what has transpired for him thus far and make sure everyone is on the same page. It has been a mentally tiring day.
All this aside, Alistair had another day of more and better communication. He has really begun to express himself and ask for things, and "please" has made it's way into his requests. It is so cute when he says please too because you can tell he doesn't want to say it, but knows he should! His speech is still very quiet and his words are short and to the point. Eloquence is still escaping him, but he is getting his point across. He just needs more restful sleep and things will continue to progress.
We are working on getting out of here Saturday, we hope. This hinges on a number of things that will be discussed in the morning, but we are passionate about getting Alistair to Children's so he can get going on rehab. Time is of the essence and we don't want to waste it. The OT/PT people here are wonderful and we wish we could take them with us, we don't want to stay here. I am willing to bet there are equally great people at Children's. Alistair just needs to be home and we need to get him there. We are in for lots additional time in the hospital at home, but at least being at home and having some reinforcements will allow us to get some much needed breaks to get refreshed and reinvigorated.
Thank you to everyone who has donated to our page to help get us home! We are truly humbled by the outpouring of support from so many people near and far. We are blessed.
I remember when Christopher was moved to the Step Down unit after his heart transplant. We went from 1 nurse per 2 patients in ICU to 1 nurse to 4 patients way down the hall with a telemetry unit on him which only showed at the nursing station. We felt like we were ALL ALONE!!! We would put our light on and it was forever before anyone came. After 6 weeks in ICU we were panicked - a huge transition. Christopher could put on is light but we never left him alone in the hospital because he simply would NOT let us leave. Oh boy.....don't you just love new things you can't control - several times a day in a strange city and hospital??? Luckily we were only 60 miles away from family and friends - not half way across the entire U.S. It is utterly exhausting so if you wonder why you are wiped out when you have done nothing physical it is because you ARE wiped out! Grandma Judy will be a great one to stay - three cheers for supportive grandparents! Love you.
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