John has been home for 4 days. He was released last week Friday. Yes, I will admit that was John's goal. He said he wanted to be home Friday - I said, let's try for Monday. He did it - it was Friday. Once he started improving he got better and better every day. Once that feeding tube came out he ate and ate and ate. One day he wanted pizza - we ordered pizza :) What ever he wanted, I got him. That was the only good thing about him "sleeping" for 2 weeks. He woke up with somewhat of an appetite and ready to eat. Every thing does not taste fabulous, but he can eat with out a problem and NO nausea. Because he is on steroids his blood sugar is high :( So, he came home with insulin - typically needs it 4 times a day too. The tachro he was on is an immuno suppresant. He needs to be on it, but his body did not like it. We are pretty sure his liver just was working slow and was holding on to it, so we HATE tachro. But, now what???? Their is a similar drug that can be used, but the Dr.'s don't feel like he should start it yet. Right now he is on enough steroids that it isn't necessary, but eventually he will have to start cyclosporan. He is feeling better and better every day. He is still pretty weak, he can get up and down the stairs but it takes all his energy. He has lost a ton of weight (since October about 45-50 pounds). He is so tiny. So for once in his life he can eat whatever he wants and enjoy it and try to gain some weight. Overall John is doing good. Still recovering from his Allo transplant AND now recovering from dehydration, liver and kidney failure, and a brain that was working slow for 3 weeks. He is pretty tired, but that is to be expected.
John has gone out with us a few times to the park and splash pads. His mind is getting better every day, but still a little slow at some things. Our best friends from CA came out last week and I begged them to stay :) Linzi stayed with her kids while Erick flew back for a week to work. I do not know how I could have done this without Linzi. Although 9 kids in one house is a lot, we are so so glad they have been here. We will miss them when they leave Friday.
Today John had a clinic appointment (3 1/2 hours). It went good and it is so nice to be seen in the out patient clinic and not in patient. Although they had to put us in an inpatient room because the clinic was full :) It was fun to see so many friends. John's counts are all doing good. His liver is still a little high, but the Dr. said it is normal for what he has been through. (it just makes me nervous).
Here is the past week in photos (kind of backwards though - sorry):
This was all at the hospital today for John's appointment. Top left going clockwise: (1) John and Tony (our favorite our out patient clinic nurse), (2) John and Dr. Ford, (3)John, Ashley (one of our favorite in patient nurses) and I, (4) My new friend Denise and I.
Last night 2 of John's mission companions came over for a visit. It was been over 12 years since he has seen them. It was so fun listening to them talk mission stories.
Saturday we went to a splash pad park for a little bit. To keep John safe he has on sunscreen, a hat, sunglasses and is in our shade tent. It was so nice to be outside.
YAY - we are leaving. (1) John and Alyssa (another favorite in patient nurse), (2) John and Aimee (a favorite CNA), (3) John and Sarada (a Dr. from India helping our for a while whom we LOVE), (4) John and another favorite nurse (Whitney) and then John and another favorite nurse Kyle.
This was one of the first days John was feeling better and he was able to go outside. It took a lot of energy and he had to use his walker, but it was worth it and it felt so good. It had been 17 days since he had been outside.
This me with Jeremy Hoop. Jeremy is one of John's friends from growing up. He came and sang at John's bone marrow drive on John's birthday.
John's 41st birthday with Gwen, Christy, Beth and baby Derek.
Another birthday photo with family.
The first day the kids got to see him after his birthday (it was 10 days later). You can just barely see his feeding tube going in his nose.
The more John and I talk about our 3 weeks of hell, the more I realize he remembers so little. He does not remember his birthday or these pictures, he does not remember Sarada bringing him a cake, he does not remember many of his tests and procedures, he does not remember many of the nurses he had, or Dr's visits (up to 4 times a day), he does not remember changing rooms (3 times), he does not even remember going to the hospital and being admitted. I guess it is a good thing. He has read my blog and facebook updates and has not asked many questions. It is just not fun to talk about. We are just glad he made it through it and is improving every day.
Thank you again for all you support.
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