Day 28 - September 20, 2015

Jeff reports another good day. No surprise there with how well he has held up so far. He never ceases to amaze us!

Last night they put a bulky humidity mask over his face while he slept to try and reduce the cotton mouth he is experiencing. It's a nasty side effect of his medications. He says the mask is noisy and obnoxious and makes it very difficult for him to get a drink. He has a special cup the therapist rigged for him so he can get a drink by himself without worrying about spills.

Impressively he lasted until about 4 am before finally taking the mask off for good. He was done trying to get it out of the way to take a drink. After he removed it was when he really noticed the benefits it had given him. He soon experienced a shrinking sensation in his mouth as things dried out even more.

It seems more and more frequently he is having to fight two evils. Horrible, annoying mask or horrible, annoying dry mouth. Not enough pain meds and too much pain, too many pain meds and way too drowsy.

Of course he doesn't let it get him down. He continues to look for the good in each situation and has a way of finding it.

He reported that the mask seemed to improve his dry mouth by at least 30 percent, which may make it worth trying again. While his pain is not very well controlled during the bulk of the day, it seems to get better in the evenings and with fewer pain meds he is more alert.

I don't think any of us knew just how much of an eternal optimist he is until now! But then again, he never had cause to search out silver linings like he does now. We are definitely grateful he has a knack for it.

His breakfast was late arriving to his room, but he says it was fine. He is also still enjoying the food they serve him.

He got his hair washed today and how he described it made us laugh. "Annette scratched my whole head with her fingernails and shampoo and it was awesome!" It's always been a favorite thing of his for Annette to scratch his scalp with her fingernails.

Jeff's sister Elise and her daughter Olivia came to visit with Jay. Elise helped him during his morning therapy. He worked on his balance by sitting up and hitting a balloon back and forth with her.

Later Jeff's Aunt Nola (Jay's sister) and her husband Chuck came to visit. Jeff and Annette really enjoyed the time they got to spend with them.

Rick Anderson, a childhood friend of Jeff's, also came today. He brought a friend of his that is also paralyzed. While their situations are different because the friend has the use of his hands and stomach muscles, Jeff said it was great hearing his story and seeing his success. He can even stand and waddle, though Jeff pointed out his wheelchair is much more efficient.

Things were very busy this morning and everyone (Jeff, Annette, and the staff) forgot about emptying Jeff's bladder. When they finally remembered they got 1300mL's out! That's over a liter! To put it into perspective most people feel the urge to pee between 200 and 500mL's. It might be considered a small mercy that he wasn't able to feel that because it probably would have been awfully painful.

Then this evening when he reminded the nurse to empty his bladder because it was getting close to being time he was told he would have to wait because they were busy from being short staffed.

His biggest frustration with this is that he feels the nurses need an advocate. Someone with time and money to really make a difference. If the staff is happy and able to do their job properly then the patients are all happy. It seems simple enough, but his experience so far has included way too many overworked staff members who have way too many places to be all at once.

He said, "Shame on the overpaid CEO's for allowing this to happen." They cut costs to line their pockets and in the end it's the staff working for them and ultimately the patients who suffer.

On a lighter note, Jeff loves the demo bed he is using and enjoys teaching all the nurses and staff members how to use it. He thinks within the month he'll have everyone trained properly on its use!

And lastly for today Jeff and Annette tried to watch a movie together, one from the Divergent series. They quickly learned that it was an impossible task with how many interruptions they get. It may be a while before they try that again!

As always we end the day full of gratitude and with a spirit of humility that can only come through difficult times. There is no doubt of the Lord's love for our dad and our family. We know that He hears our prayers, knows our needs and desires, and blesses us according to our faith.

Thank you for being His hands during this difficult time. There is no doubt that our prayers are being answered every day through the service you all provide us. From well wishes to a bowl of soup, it all means so much to all of us. Thank you!