As I write this post it is still the 9th, so tomorrow Dan will have been in the hospital for 4 weeks straight. I realized today that this will be his longest straight hospital stay through this journey so far. We met with a palliative care social worker today and she said 4 weeks can feel like 4 years when you are in the hospital and it is so true.
Things with Dan haven’t changed that much. He still has lots of edema on his legs. It is slowly getting better though. The doctors are getting a handle on his pulse during and after dialysis. Ever since the GI bleed, Dan has been having intestinal issues. They have diagnosed it as an ileus, which means his intestines are just sleeping and not working at all. Dan has been barely eating and then when he does eat, gets nauseous and throws up. Tonight they did a cat scan to make sure there isn’t a blockage. Tomorrow we will hear more about it. Physical therapy came today and worked with Dan. Dan has become really weak and deconditioned from being so sick and being in the hospital for so long. He can’t stand from sitting, so they will now be using the mechanical lift to move him to a chair. The lift is great, it will also allow him to get into a wheelchair and we can go for walks.
The other day he did do a little shuffle walk to a wheelchair and we got outside. Marti brought Jackson down for a visit. Here is a picture Jackson took, he wanted us to make silly faces.
The other night, I think it was a day without dialysis, Dan was feeling pretty good (no nausea and alert enough to participate). We passed the time with a little game a friend mailed to us. It’s called HedBanz.
One more thing to add before I go to sleep… I thought I knew the hospital pretty well. It’s been more than three months that I’ve been here if you add it all together… And amazingly I found something new today. I had no idea there was ice cream like this downstairs! I’m pretty excited about it. Dan can’t have any yet, but once he can I will get us both some.
Things seem to be going slightly better. Yesterday morning Dan was not looking forward to dialysis again. They gave him some medicine to help him rest through it, which helped because he slept through most of it. It went lots better than the day before. His pulse still went high, but the doctors treated it earlier this time. They gave him two doses of diltiazem and that helped a little. Here was before and after the diltiazem. It’s crazy to see him sleeping and his heart is racing at 160 beats a minute.
Dan’s mom came with Jackson in the early afternoon yesterday. I didn’t want to go too far, so Jackson and I went for a walk outside along the river and then got some lunch.
Dan slept most of last night too, with no major issues. This morning he had some jello and chicken broth. Dan stood with some help and sat in a wheel chair and I pushed him around the hall, it was good to get him out of the room. Dan’s stomach felt ok still, so the doctor graduated him to the kidney diet menu. He had some cereal and is now taking a nap. Today they are giving his body some rest from dialysis and will go again with it tomorrow. They don’t want to do too much dialysis because then his kidneys won’t be able to bounce back.
Dan’s mom is coming again this afternoon, so I’ll hang out with Jackson again for a bit. It’s impossible to feel like things are balanced. I miss Jackson so much when I’m with Dan, but I know Dan needs me here. I am thankful for Marti being able to watch him and bring him down for visits. I don’t think it could be any better in this situation. The situation is just so difficult.
We thought yesterday was going to continue to get better, but unfortunately the dialysis catheter was not working right. The nurses tried a bunch of different things, but the machine kept alarming. And this alarm is not a quiet one. It is a loud and annoying beep that was going on and off for more than two hours. Nothing worked to fix it, so the doctors put in an order for a new and better catheter to be placed today. Dan could tell that he didn’t get dialysis. He started to feel bad again.
This morning we were happy to see the transport nurse arrive to take him down to the radiology department for the new catheter. They got the new catheter in fine. Now Dan has an IV port in his right upper chest and a dialysis port in his left upper chest.
He was anxious to start dialysis today to get some extra fluid off. Once they got the machine set up, it worked great, no alarms this time. However, about an hour into it, his heart rate rate started to go up. And it stayed up. His pulse ranged from about 120-150’s. Which he has been having this problem intermittently for the last couple of weeks. The doctors ordered dialysis for 4 hours today. Dan pushed through it and finished all 4 hours and got about 4.5 lbs off too. But it was not fun, he didn’t feel good at all through it. I don’t remember dialysis making him feel so bad two years ago. This time is just rough though.
Once he stopped the dialysis we were hoping his heart rate would convert back to normal on its own. It hasn’t and Dan still feels terrible. So the doctors ordered a dose of diltiazem. But that didn’t help this time. So right now we are just waiting to hear what the next plan is because your heart rate isn’t supposed to be this high when you are just laying in bed.
First just want to say Dan is doing a lot better today than yesterday.
Now I’ll go over what has been going on. Yesterday the doctors were concerned about Dan throwing up because there was blood in it. They did some tests and had the GI doctor come evaluate him. His blood count is slightly low but stable. If it gets worse, they would do an endoscopy to see where exactly he is bleeding from. I think they would normally do it now, but are cautious because of his condition. They are giving him some IV protonix to help his stomach. He has not vomited since yesterday and his blood count is still stable.
Because Dan is having dialysis now, they moved us to the dialysis floor this morning. The room looks the exact same, just different floor and different view out the window.
It’s such a good feeling to see Dan doing better today. It’s amazing how terrible you feel when your kidneys aren’t working that great. The doctors are still thinking/hoping that the dialysis will be temporary. Since this is his second time having dialysis (read about his first dialysis here), he might need more than last time. The doctors have mentioned maybe for two weeks, but it’s all pretty much a guess. (Just want to say though, that I’m so happy he’s not intubated and on a ventilator like last time though!)
The doctor is having Dan go slow with foods, so he was allowed clear liquids tonight. He picked jello and an Italian ice. And he sat up at the edge of the bed to eat it, which was great to see. Afterwards he layed back down and was dozing off watching tv, while I set up my bed.
It’s been a long 24 hours. Dan didn’t sleep at all last night, he just felt terrible. His kidneys started acting up again two days ago and this morning was worse. The doctors decided to start dialysis today, so they had to put in a dialysis catheter. They did about 2 1/2 hours of dialysis today, which took off about 4 lbs of fluid. He still doesn’t feel much better though. He has also been throwing up today, so the GI doctors are going to come evaluate him tonight. After a long day, Dan is finally getting some sleep. He seems to be breathing better now too.
I got to stay in the room when the doctor put the dialysis catheter in, but I had to wear a hair cap and mask. I showed it to Jackson and he was excited to wear it too.
I did some decorating yesterday, got some pictures up on the board in the room.
Here is the hall we’ve been on for almost a week now. Feels like it’s been longer. The team of doctors have been great though. They come and see Dan every day. Dan sees the regular floor attending doctor, pulmonary transplant team, renal (kidney) doctor, infectious disease doctors, and the palliative care team.
Earlier in the week they took Dan off amphoterrible and switched him to another medicine (posaconazole), which doesn’t affect the kidneys. So right now, we are basically just waiting for his kidneys to slowly recover. They are…just very slowly.
Dan still has a lot of edema (water weight), so they have him on a lasix drip to help him pee it off. They don’t want to do too much cause it can be hard on the body, including the kidneys. So it’s a balancing act…which everything right now seems like a balancing act.
As Dan has been getting some of the water off, he has been breathing a little easier and sleeping better. We don’t know how much longer he will need to be in here, it just depends on how well his kidneys keep recovering.
Well maybe it’s time for a blog post. I have been thinking about it, but just wasn’t sure if I wanted to or not.
Dan had been in the Bend hospital for the last 10 days with a lung infection. He has been having all sorts of little complications and the local doctors finally decided it was time to send him up to a bigger hospital. So, Dan and I flew in the Airlink fixed wing yesterday. It was quite the rush of packing for me. It’s hard to pack when you don’t know how long you will be staying.
His breathing has been better since he was admitted last week. They are giving him new medications to treat the infection. However, the meds and his lungs having to work harder have created some problems. One of the medications he is on is nicknamed Amphoterrible. It’s causing his kidneys to act up and raise his creatinine and potassium levels. They are trying multiple things to keep the creatinine and potassium from going up higher. Temporary dialysis might have to be an option if it gets much worse.
It’s good to be at a hospital where they are more familiar with these kind of situations. The nurses admitting Dan last night were very nice. There is a little bit of adjustment though while the doctors are having to learn all about Dan’s case and while they consult all the doctors here to make a plan.
Just wanted to say I’m so thankful for so many things right now. A big one of course is that Dan is with us and doing pretty good right now. I’m also so thankful for all of the support that we received through this transplant journey. I think back to all the comments and people that prayed for us, it still just overwhelms me and brings tears to me eyes.
Great Stride Team Meyer shirts are now for sale!! They cost $10 each. We have adult unisex small, medium, large and extra large available. If you would like to order kid/youth sizes, contact me ASAP!
Order your shirt now to guarantee one for the Great Strides walk! You can email, call, text, reply to this post, etc, if you’d like to order one. If you have any questions, let me know!
Here are what the shirts look like.
I want to add a note about the Great Strides CF Walk to make sure everyone understands… The walk is free. You are not required to preregister. You are not required to donate or fundraise. It’s very simple.
The walk has a different meaning for different individuals, but I feel the walk is about supporting those with CF. If you are able, we would love to see you support those with CF at the walk on June 15th (9am check-in, 10am walk starts) at Sam Johnson Park in Redmond Oregon. Come join us for a fun walk and a Team Meyer BBQ afterwards!
And one more thing, you are not required to actually walk at the walk.