Life after stroke - evening of day 4

All I can say is what a roller coaster and poor Mark. Lots going on today. I feel like the walls are closing in around me. That's the best way I can describe how I feel right now. And if I feel like this, I can't imagine how my Mom and Mark feel. Mom found out from Mark's work today that his insurance runs out at the end of the month. We filed for disability but mom was told that Medicare won't start until a year after he's been approved for disability. That is just another element in the mix right now...

Mark did not pass the Barium Swallow Test this morning. At this time, it's still too dangerous for him to eat or drink anything by mouth.  We had already been told that by a speech therapist and Dr. Kendra, but this test proved it for sure. This means, he needs a feeding tube to get the nutrients he needs. The barium from the test is also causing him to be extremely nauseous and he just threw up. This is really scary for someone who can't swallow because the fluid could get into his lungs. 

This morning, a physical therapist and occupational therapist came for a session with Mark. He did a lot of amazing stuff for them. He was sitting up on his own. They helped him stand up and they were barely having to support him and then they got him sitting up in a chair. After that intense workout, and the fact that he was making progress, Mark had a HUGE smile on his face when he was done and started crying. You could see his top and bottom teeth - on BOTH sides of his mouth. We have not seen this kind of facial expression or show of emotion from him yet and I see that as a huge improvement. The therapists were very encouraged by what Mark did and said that is a good sign about how he might improve in therapy.

A nurse practitioner came to see Mark, someone who knows a lot about his history, and was very happy to hear how well he did in therapy. She was also happy to hear about improvements in showing facial expressions and emotion. She thought those were all good signs that he should be given the chance to keep fighting and get the feeding tubes. However, she explained that Mark's team had discussed the feeding tube and the neurologists on the team weren't convinced that Mark should have it. They were concerned about his quality of life and keeping him alive if he never regains the ability to communicate.

For that reason, a team of neurologists came to do an assessment of Mark's responsiveness. They still believe he is not responding to verbal cues. Mark's favorite neurologist, Dr. Cavalari, came to talk to us and shared the same concerns as the other neuro doctors; it all comes down to quality of life. He seemed to agree with the feeding tube decision right now, but said the really difficult decision will come in a few weeks as we discover what does and doesn't repair after the stroke. That will be the question of quality of life but he agreed, we won't really start to get answers about Mark's progress for a few weeks.

Shortly after Dr. Cavalari left, a GI doctor came in to discuss the feeding tube options. He wanted to try to go down through the nose, even though Dr. Kendra didn't think this would work given Mark's bowel recession surgery, the GI seemed to strongly recommend trying it first. It's a safer procedure and they won't really know whether they can or can't do it that way until they try. However, they wouldn't try until tomorrow and if it didn't work, he wouldn't get the surgery for the feeding tube until Thursday, at the earliest. As of now, that is the plan.

They are trying to get the feeding tube procedure (through the nose) scheduled for tomorrow and we hope that it will work! Otherwise, they will have to schedule the surgery. He's also scheduled to get a CT scan of the chest tonight at 9:00 p.m., just to see what is going on with the tumors in his lungs. His team of doctors just want to have an understanding of the whole picture with his body and this will help to give them that.

He has had a very long day (we all have) and he is sleeping like a baby.