We had our monthly visit to UF this week. Here's the recap...
Good news: He added another lap to his 6 minute walk! His docs want him to start slowly pushing himself to see what his body does. His heart rate jumped and he was tired but it was good to see him do a little more!! Also, his O2 sats were great for the second time in a row. He feels good, looks good and will be having a heart cath next month to verify his pressures and see what is happening in there definitively .
Bad news: He lost a pound. I know it's not much but it is for him. He also was given quite the "lecture" from his doctors about not being compliant with his meds.
I finally had to spell it all out with them. Mostly my frustration with him not being honest with me about taking his medicine/CPAP. I've been finding out over the last few weeks (either by checking his dose counter or counting pills, or speaking at length with the pharmaceutical company) that he isn't being honest with me and is not either taking ALL the doses he needs and/or not wearing his CPAP. I know it's a lot for him to remember and it is a lot for him overall but he needs to understand how important EACH medicine/treatment is for him.
I told his doctor that I didn't think he realized how serious his disease is for him. It is hard at times to think he's even sick. He looks fine, acts fine, and to him... feels fine. SO... she got out a copy of the heart and drew on it, made notes on it and went over everything for him, again, to make sure he knew it. I think now that we've been hearing all the terminology for over a year, it made more sense to him. He was not happy to hear it all and said it scared him when I asked how he was feeling. I said good.
Not to be mean, but I want it to scare him. I need it to scare him. I want him to be 100% willing to do whatever it will take to keep him alive for a long time.
He really does hate the CPAP so we are waiting to hear from the respiratory therapist to see about switching out masks. I really was hoping the doctors would tell him that part wasn't so necessary and they would let him drop it but they didn't. Not even a little.
One thing I've been thinking about and wanted to make sure I brought up with his doctors this visit is that Josh has never felt sick. He had some wheezing and such but overall has never really FELT this disease. So I wanted to know what they thought about stopping all treatment until he feels sick. To let him feel what this is going to do to him. Maybe then he would be more compliant with the meds. OF COURSE, this is NOT something I want to do but have just been wondering if it would help and wanted the doctors input.
They gave me thier input alright. They told us that if we stopped all treatment, Joshua would have 2-5 years to live. That was hard to hear again but now we know... it's a no brainer isn't it?
So... I am hoping and praying that with this new "enlightenment" for Josh, that he will get on board and take his meds and do everything he needs to do. Pray for him to be diligent and willing to do whatever it takes.
It's such a fine, muddied line when I try to figure out how much Joshua is capable of doing himself and how much is he just being lazy/not caring? How much can I expect from him? Is this as good as he can get? Do I need to just hand him his meds and watch him take each dose?
So... I spent some time speaking with our social worker Mary (every patient with a terminal illness has a social worker assigned to them). She is so wonderful, very helpful and extremely knowledgeable. She is requesting we get some neuro psych testing done for Joshua so we know what he is and is not capable of doing himself, how he learns, and how he processes things. We will be doing this very soon. Hopefully this will help me also know how much I need to do for him vs. how much he can do for himself, and basically how much to expect from him.
Another psych evaluation we are doing is for Voc Rehab. I set up a meeting with them once I found out that if you have a disability, they will help cover part of your college tuition. So please be praying they will want to cover most of his tuition next year!!! As far as I know, the testing they are doing is different than the testing UF will do.
That is most of our visit this week. It was a lot of info but a very informative and much needed visit.
We go back next month for the heart cath. We will find out our date hopefully next week.
Until then, please pray for Joshua to stay the course and keep on keepin' on!