Monthly Archives: March 2012
Jackson helped push Dan’s IV pole on a walk today. We all walked down to the cafeteria and Jackson and I got lunch. Since Dan is on a low sodium diet still, he had to wait and get food back in his room.
Still no news about the last chest tube. The regular thoracic doctor is off for the weekend, so there has been a delay trying to find out if the tube is coming out today or not.
Yesterday, Cheryl and Katey, Dan’s sisters, flew back to Redmond. It was great to have them here, they were a great help.
Dan is doing good enough, that I will sleep at the house with Jackson. Last night was the first night that I haven’t slept at the hospital with Dan (even in December when he was here). I do have to admit, it was nice sleeping in an actual bed and not getting woke up at 4am for an X-ray. I just wish Dan was home too though.
Today, Jackson and I came to the hospital in the morning. Dan said had an ok night. He had a little trouble getting to sleep because he shakes and has tremors. It’s a side effect of one of the anti-rejection meds. He said once he got to sleep that he slept hard. And it took him awhile to actually wake up when the thoracic doctors came in at 6am, he finally woke up when they were leaving. The thoracic doctors said they aren’t going to remove the last chest tube today, but tomorrow they will. So we still don’t know when he will get out of here though. It might be a few more days.
We played the new Monopoly card game last night. Dan won by a lot. I had the orange cards, he had the rest. It was a fun game, I’m sure we will play again when there is time.
The doctors came by this morning and said the right chest tube can come out! The resident just came back and took it out. In about four hours, an X-ray will be done to see how he is doing without the tube. Hopefully it looks good. And then tomorrow, the other chest tube will probably be taken out.
Dan is still swollen. It’s still hard to visually tell a difference yet. Dan seems to be a little more comfortable. His weight is down again today. His creatinine level in his blood is still doing ok. They are going to try lasix pills today, instead of IV. This way he can go home and still take lasix to continue getting the fluid off.
We’ve missed two Monday’s since the last official blog weigh-in. The nurses have been weighing him everyday, but I thought I would do one. He has been gaining a pound or two a day for awhile, except for today. He was down one pound. Most of this weight is water weight, so it’s good he was down a pound today. They are trying to get it off slowly, so hopefully tomorrow he is down another pound or two. Isn’t this crazy, he is 205 pounds. In December, at his lowest, he was 139 pounds and then right before transplant (just under three weeks ago) he was 173.9 pounds.
The thoracic doctors took the left chest tube off suction today, but kept the right one on suction. After a couple hours, they had an X-ray taken. They said it looked good and maybe tomorrow the left chest tube can be taken out and right one taken off suction. That would be nice to get rid of another chest tube.
Cheryl and Katey brought Jackson down this morning and I took him back to the house. I did laundry, had a non-cafeteria lunch, and took a nap with Jackson. And we went to Target and I got a card game to play with Dan, Monopoly Deal. I heard it was fun. Here is a three year old picture we took at target today.
Three years ago today, we welcomed Jackson into our family.
Today we celebrated Jackson turning three. In my opinion, he is the best three year old ever. He is such a smart, fun, curious, funny, and loving boy. We love him so much.
I took him out to pick up lunch and some special cupcakes. He picked sushi for lunch and a vanilla with chocolate frosting cupcake from Trophy Cupcakes. The cupcakes were delicious.
Jackson savored it. About half an hour later he was still working on it.
Well, the thoracic doctor came in this morning. He said the X-ray is looking good. Output from the lasix is also good, so they’ll keep doing the same dose. And basically we just have to wait until the swelling goes down. He said since we aren’t going anywhere right now, he will wait and take the chest tubes off suction Monday. So now our guess is that Dan will maybe get to go home on Wednesday.
On Wednesday, he will be here three weeks. It’s a little disappointing, because we were hoping for two weeks. But he is doing really good and these are just small bumps, so we can handle it. He is very thankful for having the transplant and is feeling much better now than four weeks ago.
This morning when Katey and Jackson came, we all went on a walk. It’s such a nice day, we went down to the first floor and went outside for a little while. Dan hadn’t been outside since before transplant. We didn’t stay outside too long, it was a little chilly.
Dan is still all swollen. The kidney doctors ordered a kidney ultrasound. The preliminary results looked good. The kidney doctors still aren’t concerned about the edema. They think it is from his albumin and creatinine levels being off balance. They have made some recommendations to the thoracic doctors on how to slowly get the fluid off.
Our UW Lung Transplant Manual says “Rejection occurs most frequently during the first six months after transplant.” Because of this, they give him high dose immunosuppression medications to prevent rejection. This lowers his immune system so it doesn’t attack the new lungs, but at the same time lowers the ability to fight off infections and illnesses. After six months, his immune system won’t fight the new lungs as much, so the doctor reduces the amount of immunosuppression meds he will take. However, he will have to take the immunosuppression meds for the rest of his life.
Because his immune system is lowered, he needs to be very careful, especially for the next six months. The manual and doctors have told us some important things to do to prevent illness, here are the top three:
1. Hand washing – Dan and those around him will frequently need to wash hands.
2. Wear a mask – Dan will have to wear a mask in the hospital, around crowds, & when dust is in the air.
3. Avoid being around those that are sick – we have already had to miss out on some visitors because they have colds. It’s a bummer, but we don’t want to take any chances.
It’s been a busy day so far. Dan had an echocardiogram this morning and they will get the results later today. Then they took Dan to the operating room for the bronchoscope and I waited in the surgery waiting room. It was the same waiting room where we waited during transplant. It was a little weird being in there again, however it wasn’t a long wait. Dr. Mulligan came in, probably only after 20 minutes or so, said it went good. Dan’s new lungs are healing great. There was nothing that was unexpected. But Dr. Mulligan still doesn’t know why he has so much edema. So he is having the kidney doctors come back and see him today. Dr. Mulligan said they would be the best ones to try to figure this out.
Since Dan has been back in the room they have had him take more kayexelate (helps reduce potassium) and had a bladder scan (to make sure he is emptying his bladder all the way). They are also doing an urinalysis and more blood work this afternoon. It sounds like Dr. Mulligan is being very thorough and is trying to figure this out. I really appreciate that.
Dan is now eating a late lunch. He is very hungry since he hasn’t been able to eat since midnight. He ordered a grilled ham and cheese sandwich, clam chowder, salad, pretzels, red jello, a snickerdoodle and a large apple juice. I’m pretty sure he will eat it all too.
Katey brought Jackson to the hospital while Dan was having the bronch. After Dr. Mulligan came in, Jackson and I went on a walk outside. Katey waited in Dan’s room, waiting for him to return. The weather outside was beautiful. It was a little chilly, but not bad while walking. This whole time that I’ve been here (this two weeks and the month of December), I have never walked around outside the hospital. It was nice to finally get outside. It’s a beautiful walk along the water.