Monthly Archives: February 2012
Dan had another hearing test and follow up appointment for his hearing aids. His last hearing test was done at the end of December. And there has been even more hearing loss since then. Still the good news is that hearing aids will work, but bad news is that it’s permanent. The doctor was actually happy that it was all volume loss, not distortion. When distortion happens, that’s when the hearing aids won’t work as well. Since Dan still has to take the medication and his hearing has been slowly getting worse, it could cause distortion damage eventually. Hopefully he will get new lungs soon and get off the medication before it gets too bad.
Dan also did another blood test. He’s been having to do blood tests weekly. The doctors are keeping a close eye on his albumin and creatinine. The levels have been slightly better, but not good enough to stop blood tests. Next week Dan has his monthly CF doctor appointment, so we will see what he says about it then.
One of Dan’s hobbies is guns. Now that he’s been feeling better lately he has been wanting to go shooting, but of course his guns and equipment are at home. So, we found an indoor shooting range that rents guns. Today, we went and checked it out.
From left to right is Uncle Mark, Dan, cousin Neil, and cousin Ryan.
We had a good time. I could tell Dan really enjoyed it. It was a good workout for him. Standing in the shooting position for too long would cause him to get short of breath. And his arms got sore too, which you could tell towards the end because his patterns got wider.
Well, we have been in Seattle for three months today. It’s crazy. I can’t believe it’s been that long, but in the same way it feels like it has been forever.
We are homesick for sure, but know we need to be up here right now for a good reason. I’ll be happy when this adventure is over and a new adventure with Dan having new, healthy lungs starts.
This morning Dan weighed in at 173. Now only 7 pounds to go to his goal weight of 180!
Today we made it to the Seattle Aquarium. Dan, Marti (Dan’s mom), Jackson and I went. We had a good time. We got to see scuba divers feed the fish in the big tanks. Jackson had a lot of fun seeing everything.
Dan walked all around with us. It’s great that he is feeling better that he can go on trips like this with us. He still walks at a slow pace, but he felt pretty good through out the trip.
Then afterwards we ate at a restaurant next to the aquarium. There was a big carrousel that we all rode.
Probably for the last two weeks, Dan has started to read to Jackson before bed. He reads one or two books downstairs and then I read one upstairs to him in bed. Tonight, Jackson chose a book about the Ocean. We are going to try to make it to the Seattle Aquarium again tomorrow. However, if Dan gets a call for lungs instead that would be fine too.
Dan had his weekly physical therapy appointment today. He slept in, so he didn’t get his morning nebulizers done first. It’s amazing how they really help his breathing in the morning. Probably a year or so ago, he would just do the nebulizers because the doctors told him too, not because they actually helped. So he was a little more short of breath walking the long hall to the clinic today. But he still did great. He did 6 minutes on the bike to warm up.
And then he did great with the exercises. The therapist had him do four different types that will help his back muscles. The therapist said his rib feels better this week, that it’s not misaligned as much. Dan also says it isn’t as sore as it used to be, plus he’s not having to take as many pain meds for it either.
Well, now we know they hadn’t forgotten about him. Probably over the last month, Dan and I have been joking that they forgot about him and it’s not really ever going to happen. It’s so difficult just to wait and never hear any progress. So his dry run gives me extra hope that things are progressing. Dan’s health is so much better than 2 months ago, so hopefully it will keep getting better for the actual transplant. Then he will be that much stronger going into the surgery and have a better recovery.
I’m very thankful that everything went so smooth yesterday. Dan probably would have been a little happier with a few less pokes (the nurses and anesthesiologist missed a few times trying to get both his IV and arterial line in). His arms looks like he was a pincushion. The doctor said prednisone can cause veins to be more fragile. Jackson was a little disappointed and confused because we were just getting ready to go to the Seattle Aquarium. And I mean it, we were almost all packed up and ready to walk out the door within 10 minutes. He didn’t quite understand what was going on, but was very excited to hear he was staying home with Uncle Mark and cousin Alana was coming over to play. And I’m happy that the call wasn’t in the middle of the night. It would have been a little rougher if we were there through the night instead.
It was a little weird waking up this morning and thinking he almost would have had new lungs in him today. But oh well. It will come.
And thank you again for everyone’s comments and emails. Dan and I love reading them.
Right after the anesthesiologist got the arterial line in, the doctor came in and said bad news. The lungs weren’t any good he said. He didn’t know any more specifics though.
So the nurse is unhooking everything and they will send us back home. Sounds like we will be home pretty quickly, as long as traffic is fine.
Oh my goodness, oh my goodness, oh my goodness!!
At 10:57am today we got a call from the transplant nurse. She said they have lungs for Dan and to come on down to the hospital. She said he will get admitted and then do pre-transplant tests. And then wait around for a few hours. She said after all the tests, if it is a match, the surgery will be tonight. So we are really hoping this isn’t a dry run. It is super common for transplant patients to have a dry run first.
After I hung up with the nurse, I ran all around the house getting stuff together… hoping still that it is not going to be a dry run. Packing my bag with enough stuff for a couple days, again hoping we don’t get sent home tonight. Uncle Mark got home just in time from the grocery store and stayed with Jackson.
We got to the hospital pretty quick. Traffic was moving fine. Got him all admitted.
And then they sent us down to 2N, a little prep/waiting/recovery area. And now we are just waiting. They are going to do a bunch of bloodwork, get an IV in, X-ray, vitals and then we will wait.
And here is Dan waiting and playing sudoku.
Today is Monday and you know what that means…
It looks like the scale says 171 pounds! Only 9 pounds to go now until his goal weight! Dan did great this week eating like normal. We stopped his feeding tube completely during the day, so he has only been getting it at night now. This was sort of a trial week to see if he would be able to eat enough during the day to keep his weight up and it looks good. It’s so much nicer for him not having that extra bag to haul around during the day.
And Jackson and I did some fort building this morning.