Monthly Archives: January 2012
Weekly weigh in this morning was good! 164.5 pounds, so a total gain since leaving the hospital is 25.5 pounds. I can definitely tell in his face and stomach that he has gained more weight.
Tomorrow Jackson and I fly out. I usually get butterflies in my stomach before flying anyways, but this time I have lots. The hardest part is that I’m going to be away from Dan. I know the trip will go fast and I’ll be back up here before I know it, but it’s still hard.
On Tuesday, Jackson and I are flying home for three days. Yikes! I’m nervous to leave Dan. He has been feeling better lately and we have a good routine down that he will try to do more on his own. So he will be fine. Plus his mom is coming up on Monday to visit and help him while I’m gone. It’s just a big step. I haven’t been away from him for longer than a couple hours in a long time. Plus, I haven’t been more than 45 mins driving time away from him either. Redmond Oregon is a 5-6 hour drive away from him here in Seattle. If he were to get a call for transplant, depending on what time of day it was, I would be taking the next plane back or driving back ASAP.
We are borrowing a car seat from Dan’s cousin that will fit in the plane (thank you Jen & Ryan!). Jackson is also getting excited about flying in a plane and going home briefly. He was testing out the new car seat and pretending he was flying. He even got toys and a blanket to keep warm while on the pretend plane.
I’m so very thankful we aren’t in the hospital anymore. It’s been a little more than a month since Dan got out. I was thinking back to it and how scary it was. Dan doesn’t remember much, which is a good thing. I really wasn’t sure what was going to happen. I had faith that God would help us get through it, but I didn’t know how it would end. I also don’t know if I explained how things really were very well on the blog. I think I did ok, but I don’t know since I lived it.
I didn’t want to scare everyone. It was difficult for me to describe how things were sometimes. I probably kept hoping things would get better quick, so there was no need to explain how bad it was. Thankfully things did get better. One of the days he was in ICU, maybe the third day, one of the doctors told me it would be a good idea to have any family or friends come see Dan now. She was concerned that they would have to intubate Dan and then he would be sedated. So it would be good if anyone wanted to talk to him to do it now while he could still talk too.
That’s what doctors say in movies, not real life or at least not to me in my life. I didn’t feel like Dan was dying or getting worse, he was showing signs of improvement, so maybe that’s why I didn’t truly believe it. But even still, it was very hard to hear the doctor tell me that.
There were a few times I thought Dan was going to have to be intubated though. The first night in ICU and the second time in ICU the first morning. I was terrified. I’ve heard such bad things about intubating CF patients. Things that weren’t fun to hear previously and now was potentially happening. The second time, I wasn’t as terrified only because he was close to being on the transplant list. A nurse had told me a story about someone that got transplanted while intubated and waiting in ICU. So at least I had hope that a ventilator could keep him alive until transplant.
Anyways, I am so thankful that we aren’t in the hospital right now. Life isn’t perfect right now, but the three of us are together, safe and in a warm home.
I’ve been playing with this idea for awhile. I’ve decided to put a Twitter widget on the side bar. This way I can make quick, short updates without having to do a blog post. The ‘tweets’ will just be about daily stuff that is happening and then when transplant happens I can keep you updated even better. I will still plan on doing blog posts the same frequency as before. You can follow us on Twitter or just read the tweets on the side bar (so you don’t have to do anything different if you don’t want to). Right now I have the side bar to show the most recent four tweets.
Sees the invisible,
feels the intangible,
and achieves the impossible.
This was on a card we got a little bit ago. I like it and wanted to share it here.
It has already been a week since we posted Dans weight last time, so we decided to start doing a weekly weigh-in. I’m calling this weight at 160.5 pounds, which means he gained 3 1/2 pounds in a week!
Dan slept a little better last night. He slept in pretty good too. When he came downstairs this morning, Jackson showed him some exercises.
Jackson and I went to the UW hospital pharmacy to get Dan’s prescription of Amikacin. It is one of his nebulizers and it has to be compounded (made) at a special compounding pharmacy. It has a short shelf life of only five days, so I can only get five at a time. So ever since Dan has gotten out of the hospital, I’ve been coming here every five days to pick it up. I’m looking into another compounding pharmacy that might deliver the Amikacin. At home in Redmond it was delivered, which was so nice.
Dan is doing slightly better. He says he just feels cruddy and tired. Still not sleeping that great either. I still think the main reason is that his body is adjusting to the lower dose of the pain med.
We finally got the blood test done (it’s to see how the level of the posaconazole med is doing). Yesterday the roads were reported worse than the day before, so we decided not to go out in it. It’s not that we are worried about getting stuck, it’s the other people. Today it’s raining, so I think the snow will soon be gone.
Dan didn’t sleep very good he told me. He woke up this morning all achy and not feeling that great. He didn’t do very well walking around at the hospital to do the blood test. It could just be an off day, but last night we decided to decrease his pain patch. He had been doing pretty good the last few days and not having to take many oral pain meds at all. So when it came time to switch out his 72 hour pain patch, we put a lower dose one on. The hope is that he decrease the amount of pain meds slowly now, because after transplant he will need more pain meds. Dan is taking a nap now, so hopefully he will feel a little better when he wakes up.
Other news, my Mom drove home today. We had decided she could go home like a week ago, but it started snowing. We didn’t think the snow would last this long, so she was going to wait a day, then that day turned into a few days because of the snow storm. It was great having her here. She helped a lot with Jackson. Dan is doing much better since he got out of the hospital, so our plan is that we will try it without that extra person helping. Plus, we still have Uncle Mark and Aunt Carla helping a bunch too.
I got Dan an actual electric shaver. He didn’t want one because he’s tried them before and they would pull instead of cut his hair. Shaving is a big task for him, so he finally said I could get him one. He tried it out and it seems to do pretty good and he didn’t complain about it hurting.
…. Oops, I accidentally pushed publish before I was finished. If you are following in an email, below was added after the email was sent.
So here he is trying it out.
Today we woke up with more snow! We were planning on going to the hospital to have a blood test done this morning, but decided we will make the trek tomorrow. We were also supposed to go get his picc line dressing changed, but the nurse called and came to the house instead. He said he had to come up by us anyways for another patient. So that worked well that we didn’t have to go out in it today.
This is a hard post for me. It’s hard to ask for help sometimes and it’s especially hard to ask for money. I’ve been putting this off, so here it is.
Dan will have some big medical bills coming after transplant. He already received a nice one from this last hospital stay, $175,964.12 and that doesn’t even include the doctors charges. Thank goodness, he has two insurances so most of it is covered. However, the insurances won’t cover all of the transplant and there are still lots of copays, which add up very quickly. And since we are starting a new year, he has to meet his deductibles again.
I added a new page to the blog, called Donate. It’s a tab above, next to About Us and Contact Us. If you are able and would like to donate money (as a gift), we would greatly appreciate it. If you are unable to, we still appreciate your prayers and support. Thank you.