Monthly Archives: December 2011
I can’t believe it will be 2012 tomorrow. I feel like we sort of missed Halloween, Thanksgiving and Christmas. I’m hoping new lungs come soon and then we can enjoy them during the summer. Maybe it’s good that it’s rainy and dreary outside now. Dan can get new lungs and recover over the winter and then he will be ready for new adventures outside while it’s nice and warm.
Today is a lazy day. Dan has been cat napping all day and here is Jackson wearing his new slippers. I’m hoping we will all be sound asleep when the clock hits midnight. Happy New Year!
Dan was tired this morning and took a long nap. Then this afternoon he wanted to go on a walk. We got outside and it started to rain and hail a little, but we stayed outside still. We walked up the block and back. It was a nice walk. We took Rowdy out on a walk too (Rowdy is Dan’s Aunt & Uncles dog).
We are playing a new card game, Sorry Revenge, while Jackson is taking a nap. Jackson and Grandma Marti are taking a nap and Dan’s Aunt and Uncle just left for a football game. So it’s just Dan and I hanging out and playing a card game. Dan seems to be feeling slightly better every day. He seems to be doing a little more on his own and eating a little more every day too.
Here we are playing the game. He just won one round. He took his oxygen off for the picture, but left his ‘pocket pal’ hearing aid device in his ear and thats his feeding tube food hanging on the pole next to him.
We are trying to get wireless internet set up, so I can update the blog with my Ipad here at his Uncle’s house. With so much to do here with Dan and Jackson and Christmas, etc, there isn’t much down time. So I just wanted to make a quick post saying, we are still here! Dan is doing alright. We are getting the routine down better every day. We got to bed a little earlier yesterday and he woke up feeling better this morning too! And we are still waiting for the transplant phone call. Who knows when it will be. That’s the hardest part. It could be now or it could be months away. We try not to think about that last part.
We are still getting settled into our new home (thank you Uncle Mark and Aunt Carla for letting us stay here!). Things are going well. We are getting into a new routine for doing all the medications, feeding tube stuff and chest therapy ourselves (it’s a little different not having nurses and numerous specialists helping).
I hope you all have a Merry Christmas!
Waiting to get prescriptions filled at the hospital pharmacy and then we can leave! I think we have everything else set. Oxygen, feeding tube supplies, heparin shots, IV medication and supplies, chest percussion therapy, and the rest of the prescriptions…. I think that’s it. …Almost home… well our new temporary home in Seattle that is.
I took Jackson to the mall up the street from the hospital, University Village, to see Santa yesterday. We waited in line for an hour and half. Jackson wanted to wait and did such a good job in line.
Once it was finally our turn, Jackson was so excited. We get inside and he immediately shouts out “Hi Santa!” It was pretty cute. Then we go over and say hi again up close and I helped him up onto Santa’s lap. They took three pictures and Jackson did great for all of them. Then Santa asked him what he wanted for Christmas. He told him cars and a garbage truck. We had done a little practice with that question before hand, just so he knew what to expect. Then Santa gave him a little candy cane and we said goodbye. Jackson thought it was the coolest thing ever.
After such a long wait outside, we went and got a hot chocolate and lunch at a nearby hamburger restaurant.
We might be getting out of here tomorrow! We are hoping that everything will continue to go well and that Dan can get discharged tomorrow. ….However, if we didn’t get to go home tomorrow because of a double lung transplant happening tonight, that would be ok too.
I bought this bracelet yesterday at a fundraiser here at the hospital. The bracelet was made by a 14 year old girl that makes jewelry for cancer research fundraising. Here is her etsy shop.
The last couple of days we have been trying to balance the right amount and type of medication for pain and anxiety. It makes the day take forever with the ups and downs associated with the changes, but with everything going on we are still kept busy.
Today Dan had an audiology appointment for a hearing test. He has been getting them every couple months now since he’s been on the strong antibiotics. One of the side effects is possible hearing loss. The previous two hearing tests did show some high frequency loss. But now for a couple weeks, Dan has noticed more hearing loss. He always has to ask the doctors and nurses to speak up when they talk to him. The test today did show more hearing loss and this time its mid-range loss. Bad news is that it is permanent, but good news is that hearing aids will help. We made another appointment to start the process for getting hearing aids in the beginning of January.
Still no news on when the doctors are thinking of discharging Dan. They have been working on it though. They ordered a chest therapy vest for home use. Different people have come in and showed us how to do the feeding tube and blood thinner shots at home too. Oxygen will need to be delivered still and another PIC line placed for home medication infusions. Mainly I think the doctors are just watching him and making sure everything stays stable before they send him out on our own.
Dan went on two walks today. And we shaved the beard off! It was starting to bother him. It was so thick and making him hot.
Yesterday, Dan’s white blood cell count was slightly elevated. Since Dan felt good, they weren’t sure why. They decided to take out his PIC/mid-line in case it was infected (which they often can be). Good news is that this morning, the white blood count was down. So we are hoping that was the cause and it should be fine now.
However, the PIC line was having problems flushing, so they ordered an ultrasound of his arm and neck. The ultrasound lady came this afternoon and found there is a clot in the right side of his neck/upper arm. We could see it in the ultrasound and it literally looked like a bump in the road. The concern is that it could break off and go into his lungs and cause trouble. So, the treatment is to get a blood thinner shot once a day, for possibly three months.