Moving Day Roller Coaster

I'm ready to get off the moving day roller coaster, one minute we're moving the next we are not, Valley Med is on again off again on whether they are taking Jerry. When Valley Med accepted Jerry they wanted to move him right away but it took them so much time to come to the decision by then he started having a setback with fever and infection . VM wouldn't take Jerry until he was infection free, in the mean time he became ventilator dependent again. Once the infections were cleared VM was ready to take him but wanted report on his respiratory issues, once they found out he had a bronchoscopy and was needing suction every hour they again decided they couldn't take him. Today the doctor who makes the decision at VM is going to speak with the doctor here and if the VM doc likes the report from the ICU doc here then we will be moving to Valley Med today. Here's the monkey wrench, if the ICU doc feels Jerry is well enough and can be released today to VM then he is ready for discharge according to medicare and the case manager if VM decides they won't take him today or don't have a bed available for him then he will be moved to Kentfield in Marin. This is such nonsense, so much time wasted on such a simple decision, let's get on with it all ready.

On a more positive note I do believe that Jerry did not suffer severe brain damage. Jerry may need speech therapy and some brain rehab, it's really hard to know until we can get him to Valley Med for an assessment. I feel like he is at least 95% back to what he was before this accident neurologically. Jerry is communicating now with his lips, he's still unable to talk because of the trach and he's not tolerating the talking valve. Jerry has some muscle weakness on the right side of his face making it very difficult for him to form words completely with his lips which made it next to impossible to try to read his lips. The facial muscle weakness has improved significantly it's almost unnoticeable at this point and he's able to form words with his lips much more clearly, I've gotten a lot better at understanding him. Jerry is showing appropriate emotions, sadness, fear, anger, humor and has even thrown in a little sarcasm. I know he can read because I asked him if he remembered how to do so and he replied yes, I wrote some words and asked him to read them and he clearly mouthed each word. Yesterday Jer asked to be put in his wheelchair which in and of itself is a huge deal, he hates that chair and generally refuses to get in it unless he has somewhere to go. It was a huge production to get him in the chair which required the physical therapist, respiratory therapist, nurse and myself. It took time to get everyone together and Jerry was getting quite impatient and he kept asking "When are they coming?", I said "Soon", he complained "It's been 2 hours". Realizing he was right it had been 2 hours was such a meaningful moment, it meant he was aware of time, could tell time and was watching the clock and keeping track. After the production of getting Jerry in the chair and started on our walk, the therapist said "That took a little time but wasn't so bad." in which you could read the sarcasm on Jerry's expression when he said "Three hours!!!" On another occasion Jerry was trying to tell me something and I couldn't quite make it out, it looked like he was saying kiss, which didn't seem right but I asked "kiss?", "You want a kiss?", he got a huge smile, rolled his eyes, turned his head away and vehemently shook his head while mouthing "NOOOO", I had to laugh and say "I was pretty sure you weren't asking for a kiss but had to ask." lol.

So here we are, waiting patiently and hoping to move to Valley Med today.

Katie