Graham has the potential of coming home on Friday!!! We are so excited for a home coming, but nervous at how well he will do. When I say nervous, I mean scared. It's kind of like when you have your first child and you are able to take them home and then it's like, "Ummmmm, now what? What do I do?"
I've started humming the Darth Vader Death March every time the doctor or nurse practitioner walks into the room. They never have anything good to say, and it all revolves around Graham's decline or death. Have they not been witnessing the odds he has beaten in just the past 2 weeks?!?!?!?! But Dr. G actually had ok news today - the x-ray of his lungs showed that the infection is clearing up. That means the antibiotics are working! Now, it will never be all gone, because apparently the infection he has is resistant to all meds, but at least it is clearing a little.
He has also been feeling the side effects of "hypoxia;" this is when your body is deprived of a certain amount of oxygen. He has PLENTY of O2, but since he has been on such a high liter of O2, he has a fear of being without it. He is suffering from pressure headaches, tight chested anxiety, and will all of a sudden begin gasping for air. His O2 sats say he's fine, therefore it is all mental. Some people get over it (typically mountain climbers), some don't (typically pilots - good luck JT). I believe Graham is strong enough to get over this fear. It comes and goes and it is not very consistent - I know he can do it.
He is also still "junkie" in his lungs. The doctor is actually putting him back on hypertonic saline. This brings back sooooo many memories. This was the "miracle drug" of the 2000s for Cystic Fibrosis patients. An Australian doctor figured out his beach bum CF patients were doing a lot better than his regular Joe CF patients and he found that it was the breeze coming off the ocean salt water. So, enter hypertonic "beach air" saline. This should help the gunk in his lungs break up better.
Like I said before, there has been nothing but Doom and Gloom coming into room 1032, but today his Transplant Coordinator Tammie came to visit us. She was so happy to see how well Graham looked and began telling us about other Transplant patients. Specifically about a CF girl. She was 6-8 years out of transplant when she began rejecting. She was also denied another set of lungs because of her circulatory system. Hers is actually worse, she ONLY has access to her veins through her one port, Graham should have more than this. This girl (obviously she didn't say names - go HIPAA!) has also been under Rosenblatt's care for quite sometime and she has been successfully living off Photopheresis for SEVERAL years! Now we can read all the literature we want, but until we have a real story, it's hard to fully believe. We literally began smiling. Graham is NOT a clapper and he hates that I am, so I just mentally began jumping and clapping. I'm a sucker for happy stories. Tammie also began telling us all the success stories she has of this new anti-rejection med they have put Graham on. This drug, which I have forgotten the name, is used on patients for when they begin to reject. The side effects are much more prominent and it takes longer to see blood levels which is why it is a last resort med. But apparently in the Baylor Heart and Lung Transplant Clinic, there are many patients who have gone on for years on this med while in rejection - one patient in particular was MUCH worse off than Graham and actually saw improvements. Insert mental jump and clap.
Though we want Graham to be better than he is, it will be nice to have him home. I will continue to stay home to make sure he is able to do the little things. It is still a chore for him to go to and from the bathroom in his tiny little hospital room, so our house worries me. And if necessary I will bust out my Danika Kirkpatrick skills and take him right back to Baylor.
No comments:
Post a Comment