Sunday, February 28, 2010

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

Wednesday, February 24, 2010

Hi again... so not much change in status today. He can still move his shoulders, neck, head. We continue to struggle with pain. Not only is he achy laying in bed, but he has tingling pain and numbness because his nerves are exposed and sending strange signals. The other constant issue is temperature control. Because of the strange signals, his body can't regulate it. Though he is not running a fever, he feels hot and sweats. We keep his room at about 50 degrees, and keep ice packs and cool wash cloths on him.
He finished the initial IVIG treatment. There is no way to know if it did anything. It may have slowed the progress, but maybe not. Yesterday he started plasma-farisis (sp? where is a nurse when I need one!) where they pump his blood out of him, clean it out, mix clean plasma into it and pump it back in. He has dialysis ports (caths) in his neck that they use for the process. The theory is if we clean out the bad, the faster the recovery. But again, "theory". This may not change anything. So we wait.
We have a dry erase board we use for communication so he can use blinks when I point to the letter. It takes a while, but I am getting better at reading his lips. Sometimes though, he is so well medicated that he mumbles. When his lips don't move it's hard to read them. He had a swallow evaluation today, but his muscles are not strong enough yet to swallow. He will continue to be fed through a tube in his nose for another day or two then, if he still can't swallow, they will put a feeding tube into his stomach.
I thought I would be able to write from the hospital, but it is blocked. I will get to this when I can. Thanks again for all the calls, visits, texts and support! It is welcome and needed! Lu

Monday, February 22, 2010

Hi friends... just wanted a place where you all can catch up on Jimbo's condition. " Hi" from Wyatt. It is called Guillain-Barre Syndrom. There is a ton of info if you google it that can answer most of your questions. The biggest challenge is that we just don't know enough about the condition to predict what the future holds. From what I understand, this will be a long haul. I can't say thank you enough to all the support and love that has poured in. We are very lucky to have you in our lives.
Today, they put a trach in. With this he will hopefully be able to talk and eat eventually. He is basically paralyzed from the neck down, yet can feel everything. For now we are waiting. Waiting for the paralysis to reverse, waiting for the pneumonia to clear, waiting to find the right mix of meds to manage his severe pain that will not subside. My days and nights are spent at the hospital doing range of motion with his joints, finding his nurse to change his position, or just holding his hand and rubbing his forehead. I am exhausted.
I will try to post as often as there is news. There will be days with no changes. I'm new at blogging so bear with me! Again thanks for the support! Please keep it coming.