UF Tomorrow

Tomorrow morning we leave bright and early for our first UF trip in a few months. The last two appointments have been here in Jacksonville but this month we head back down to Gainesville. He has his normal appointment which includes his 6 minute walk, labs, echo, ekg and then we meet with his cardiologist. After that we will see his pulmonologist. We haven't seen her in several months so I'm happy we'll be doing that this trip. It's an all day affair but I'm glad we'll get it all done in one day versus two or three when we're in Jax.

Although I think he seems more tired, Joshua is doing okay. He hasn't been taking his medicine like he needs to and it's driving me crazy. We've finally gotten him to what seems like the easiest regimen. All of his pills are down to once a day (we changed the meds in order to have the dosage only be one time a day instead of two or three times. It's a lot of paperwork and red tape to get him approved for the new meds.) He still takes his inhaled medicine (the micro nebulized med) four times a day but that's it.

I am trying to transition him to being responsible for his medical care and it's really really hard. At some point he has to decide he's going to take his medical needs seriously. He wants to wait until he FEELS sick. I've told him, again, that if we wait until then, we cannot reverse the damage done. We caught this early (as far as the doctors think), so he isn't feeling much different than he always has, but he's also been on meds for over a year. He doesn't seem to understand that if he stops taking the meds, he will get worse and then he really won't like what he'll need to do if he has a central line, or worse.

So.... please pray for us tomorrow if you think about it. I am hoping to have a serious heart to heart with the doctors tomorrow about all of this. It's always hard for me to do that because then they get in Josh's face about the seriousness of it, (which I know he needs), but then that upsets him. UGH!! Please pray they can stress all of it again, (repetition is necessary here), but that he receives it well.

I'm still praying God completely delivers him from all of this. I am praying for a complete miraculous healing. I know Joshua would use it to bring Him glory!!

I hope you're enjoying your fall weather, wherever you are!!!