Hi all...
Sorry it has been a few days. But there have been some exciting things going on! First, they are working on his pain meds. The new med usually works well for GB patients. It's methadone. They will gradually get him off the fentanyl drip and he will have the methadone and neurontin. Both are oral so when he is ready, he will not need the IV just for pain meds.
The feeding tube came out of his nose and is now in his stomach. Less chance of infection and definitely more comfortable for him!
Next, respiratory. The have had him breathing on his own for short times over the past 3 days. They disconnect the vent and put humidified oxygen in front of the trach and he breathes on his own! Yesterday they put a valve on the trach that allowed him to talk. It was rough and he coughed a lot, but he was able to say hi to me and said " Diane is my favorite nurse." She was giving him pain meds at the time... but it was a full sentence! With the vent collar deflated in his throat, he was pretty uncomfortable. His throat feels very scratchy, and it is. It will take time for him to get used to it. This morning, he has been off the vent for about 3 hours so far!
Next, movement! Yes, he is making huge strides. Yesterday with therapy, he dangled at the side of the bed and looked great! He was working hard to balance his torso with just a little help! This morning at about 4am he was able to flex his right thumb and on his left hand, he closed his thumb and finger to "pinch" my hand. Not a huge movement, but progress! At 10a he flexed muscles in both legs for the neuro doctor that stopped in to see him!
Finally, his attitude. I am constantly amazed at how well he his handling all this! He jokes, laughs, and even gave marriage advice to his night nurse last night. You all know Jimbo... any one of the issues he is dealing with would send him over the edge. Yet, he has kept positive and works hard! I have no idea how he is managing so well. He cried on Friday and told me how much this sucks. And it does. But that was it... he really remains in great spirits... and I know so much of that is from the love and support we have received. With every text, message and phone call, I let him know you are all thinking of him and wishing him a speedy recovery. It is working! I am amazed at your support, and have no idea how to thank you all! I know Jim is a great person, and you have all helped him to believe it is true! He truly has many reasons to continue to fight and laugh even in his situation! Please keep it coming. With all the progress, we are far from out of the woods. There is still a long haul ahead, please keep us in your thoughts and prayers. Every bit of it helps and keeps us both strong. You would all be very proud of him!
Last, I am ok. So many of you ask how I am. I am fine. My focus is nothing but Jim. I am at the hospital as much as I can... I want to be there for every bit of progress and for him to know how important he is to me, no matter the circumstance. With all the tubes out of his mouth and nose, we get to kiss. It's the highlight of my day! I still cry a little each day, but just because I feel helpless and cannot fix this. I get some sleep each night, and I am eating, when I remember. If he has a good night nurse, I go home to sleep in my own bed. Usually once every 2 or 3 nights. Wyatt is good as well. Uncle Glyn is here now to entertain him, and my parents will stay here until I tell them they can go... not for a while yet.
Gotta go shower and eat... then get back to the hospital to watch therapy at 2p. Thanks again for the love and support!!!!!! Lu