Not out of the woods . . .

Happy to see this when I got here on Thr.

It’s been a very rough week here for Mike. A CT scan showed some pneumonia and a small hole in his upper right lung. To treat that they turned up the oxygen a bit. That actually seems to be better as of this writing. This is a good thing because that means they can use the Cpap and BiPap to give his lungs a rest.

Heparin shots were started to ward off a Pulmonary Embolism while Mike wasn’t moving much. By Thursday he was able to get up and we walked down to the cafeteria. He had some ice cream before we walked back to the unit.

On Friday his cousin Derek visited and he was able to get outside to enjoy a bit of that beautiful late summer weather we are having. He also got to go to the cafeteria to get some more ice cream. The doctors were very happy to hear Mike got to go on a couple walks with Derek. Mike enjoyed his visit very much.

Today is a bit more of a fight. CO2 levels are rising. Hard to get the pain under control and still maintain oxygen levels and all that good stuff.

The doctor would like to move Mike to a higher care unit but he is resisting for now. He has agreed to use the BiPap for a while, especially when resting.

Mike is not out of the woods but wants you to know he is fighting. He would also like to thank the brothers who were able to help Katie today. He wishes he could be there with you but knows you are taking good care of her and helping her get done what needs to be done.

Mike asked me to take and then post this picture.

Mike wrote on a piece of paper to please add this caption "this is one of the many things I have to do to stay alive."

I was able to talk to his doctor today and she said that they did an x-ray this morning and it looked like things had improved a bit. Baby steps in the right direction. The picture above is with Mike on his BiPap. It is helping his lungs get some rest but he isn't able to communicate very well. After a few attempts at writing on paper he decided to do what he does best - text.

All of us parents have joked about texting our kids in the next room but I gotta tell ya, I was very much relieved that he was able to text me what he wanted to say and I could text him back - even though we were less than 2 feet away from each other. Hard to talk and hear with that thing on. Love it when technology comes through.

His oxygen sats are staying nicely at 95% or higher with this on so we are very thankful for that. Without it he goes down to around 84%.

I know the question we all have right now. How much time does Mike have left? Like you, I wish I had that crystal ball that tells us exactly what that answer is. Doctors can't answer that either. I'm frustrated because I thought we would know that better by now.

I had a conversation with Mike's NP the other day. I asked her if she thought Mike will get through this. She said of course we don't know for sure but he is such a fighter she believed if things could continue to move forward he would. I thanked her for her honesty. I shared that I believed that one of the blessings of CF is that it has caused us to look at mortality from the very beginning. For that I am thankful. She said she has wondered if that was really a blessing for CF families. I'm sure that it is different for each family but I assured her that for us it has been a gift.. I believe most Christians would agree.

I know that I have lived more days than not realizing that life is fleeting. I believe Mike has also.

Teach us to number our days aright,

that we may gain a heart of wisdom. Psalm 90:12

 

With each declining PFT report we have the opportunity to be aware of Mike's mortality. In so doing, it makes us all more aware of our own mortality.



 

Ecclesiastes 7:2 It is better to go to a house of mourning than to go to a house of feasting, for death is the destiny of every man;

the living should take this to heart.

So rather than go crazy and become obsessed with how much time he has left, Mike chooses to live out each day - kind of as if it were among his last. As the time becomes apparently closer to the time he will say good-bye, there is a temptation for those around him to become anxious and in so doing try to "fix" things. He wants you to know that he is doing everything he can endure to make the most of his time left.

"I just want everyone to appreciate

the time they have left with me."

In other words, he feels badly when someone suggests - no matter how well meaning - that if he would just eat more maybe he could stay out of the hospital longer, etc. If that were true that would mean there is something Mike could do to change what is happening and that is not truth. Thank you for understanding.

One step at a time. We'll keep you posted. Hope all is well with all of you.

Blessings to you!