Monthly Archives: April 2012

Scootin’

Jackson got to play with cousin Alana today and she brought her scooter over too! Dan and I took them to the school nearby and played for a bit.

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Friday Night Fun

We have had a couple of quiet days. It has been a little rainy, so we have just been playing at home. Tonight we are making some Oatmeal Chocolate Chip cookies for dessert.

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Great Strides 5k (Save the Date)

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June 16, 2012!!

Mark your calendars for a fun time in Central Oregon. We hope to be back in town for the Redmond Great Strides 5k. A great fundraiser to support the Cystic Fibrosis Foundation and their search for a cure. Many of our family and friends will be there. You can join our team and walk with us or donate money to the CF Foundation at our Great Strides Team Big Dan site.

We will also have race day “Team Big Dan” T-shirts. Design and sign-ups for them to come.

Hope to see everyone out who can make it. This will be Dan’s first 5k since his transplant. It should be alot of fun!

Catch up and Zoo!

Going home was great. It was a nice break from our routine up here in Seattle. We can’t wait until we are home permanently. We are just waiting for the doctor to give the ok.

Yesterday’s doctor appointment went well. The doctor slightly increased his blood pressure medicine again and made some other adjustments to his meds. He said Dan didn’t have to do a weekly appointment, but could come back in two weeks. However when we made the appointment, it actually did end up being Friday of next week. And then he still does want blood work Monday. And he also has an infectious disease doctor appointment on Thursday, so we will be visiting the hospital a couple times next week.

Dan’s mom bought us a membership to the Woodland Zoo! So we are going to make Wednesday zoo day! The zoo is only 5 miles away from our house, so we need to take advantage of it. Today it rained a little, but we were ok with our rain coats on. We walked through about half the zoo today and will see other animals next week. Today, we got to see an elephant get a shower, that was neat.

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Busy busy

I feel like we’ve been going non-stop. It’s been fun though. We have seen lots of family and friends, sorry to those we didn’t get to see this time. We can’t wait until we get to come back home permanently. Here are some pictures from the last three days. We will be driving back to Seattle leaving early tomorrow morning.

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Impressive hospital statement and doctor visit

Just wanted to share, we thought this was impressive.

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This isn’t a bill. It’s being sent to Dan’s insurance, but it’s the biggest one we have seen yet. This doesn’t include all the charges either, one being the doctors fees.

Dan’s appointments this morning went well. The doctor increased the blood pressure medicine slightly. Dan’s PFT’s were good. The doctor didn’t really know why Dan wasn’t feeling good over the weekend. He said sometimes he’ll just have bad days.

Dan has been noticing his sternum is still sore, so he asked about that. Dr. Tonelli said it’s because he has wires in there and it will just take time to heal. Dan and I were both confused. We were told by one of the surgeons that they didn’t have to cut his sternum. Dr. Tonelli said there might have been confusion because it wasn’t cut vertically to open up the chest wide open, but for Dan’s type of incision it was cut horizontally and he knew because he saw the wires in the side-view X-ray! So all along we were wrong and they did cut Dan’s sternum.

Also, big news, the doctor said we could drive home for a quick trip! He was cautious about saying yes, but things are stable enough for a quick trip down and back. We need to get some things from home, especially some summer clothes. So we are going to drive down tomorrow! Jackson and I went back once in the beginning of February, but Dan hasn’t been home since November!

Late Monday weigh in

I was going to post this last night, but I fell asleep. We missed a couple Mondays, but here is what his weight is at now, 180 pounds.

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This is actually his goal weight! But he still has some water weight in his ankles and his face is swollen from the prednisone. 180 is way better than 200 though for water weight!

We are at the hospital right now for Dan’s weekly doctor appointment. He did the blood test and X-ray, so now we have a break and are eating a quick breakfast. Then he has to do his PFT’s and then see Dr. Tonelli.

When Dan was getting his blood test done, I recognized the lady in the waiting room. She was the other person that got a double lung transplant the day Dan got his! She is doing well. Having little bumps like Dan, but overall doing alright. It was neat to see her again though, I had been wondering how she was doing.

Pressure

Dan’s blood pressure has been high lately. The doctor prescribed a very low dose blood pressure med, hoping that will help it enough and not mess up kidney function or anything else. However, this higher bp and being on prednisone for an extended time period now makes Dan’s head feel like it’s going to explode and just an overall yucky feeling.

Outings are a little tougher. He doesn’t quite have the energy when he isn’t feeling that great. But we still have been doing some things. Today we went to the farmers market and Greenlake for a short walk. It was a beautiful day! I love blue sky.

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Daily routine

Here is Dan’s daily routine now post transplant. It is pretty different compared to this post from before transplant. One big difference is that he went from doing nine nebulizers a day to one a day, plus no more vest treatments. Another big difference, is Dan does most of this on his own now. Before, I was helping a lot. It’s super nice not having to deal with heparin shots, feeding tube bags, a picc line and posaconazole.

8am: wake up, take and record vitals (blood pressure, pulse, oxygen saturation, home spirometry (PFT) results, temperature and weight).
9am: check blood sugar, insulin shot, take morning pills and eat breakfast.
12pm: check blood sugar, insulin shot, noon pills, lunch.
6pm: check blood sugar, insulin shot, dinner pills, dinner.
9pm: evening pills, check blood sugar, insulin shot, snack, Amikacin nebulizer.
10pm: vitals again (same as morning, except weight), flush & clean feeding tube port.

Dan is also tracking his daily food intake for the nutritionist. She wants to see how many calories, potassium and salt he is getting.

Here he is doing his home spirometry and recording his vitals. The doctors have said this is the most important tool to know how his lungs are doing. If the spirometry numbers start going down, Dan would need to let the doctor know right away. It could be a sign of rejection. PFT’s can go down without Dan noticing any difference, so that’s why it is so important to do.

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Hearing & school

This morning Dan had another appointment at the hospital. This time it was a hearing aid follow-up appointment. The doctor did a full hearing test again and guess what? Dan’s hearing was a little better. We have no idea why. The doctor is going to ask some of his colleagues if they have heard of this before. We were in and out within half an hour. That was nice, especially compared to yesterday.

We got back home and played “school.” Jackson practiced cutting and writing his name.

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