Some Pictures

Here are a few pictures of Scott doing normal stuff again. After church on Sunday we celebrated Thomas' 3rd birthday. This is when Thomas was opening presents. It's really nice to have Scott home. The kids love to snuggle with him!

Getting back to normal one day at a time

Scott has come home for 5-9 hours each of the last 4 days! It has been so good to have him home. I’ve loved answering the kids requests by saying “Go ask your Dad”!!!!! It is such a blessing and relief to feel like I’m sharing the responsibility of parenting again. It feels pretty normal when Scott is home. I like normal. Scott even went to church on Sunday. It was the first time in 5 and a half months! He stayed the whole time and loved being there. I’m starting to really reflect on time. Some days have dragged on and felt like eternity. In 2 days it will be 3 months since the heart transplant. It will also be his 166th day in the hospital. My whole life has changed during this experience. Scott has changed too. We aren’t who we were. I hope we’re better. I know that I have learned to be more compassionate from all of the compassion I have received. I am still learning patience. I’ve definitely learned gratitude and humility too. I try not to ask: Why me/us. Why did we get this trial? Why did Scott make it when others don’t? Why do things take so long? I’m learning to just be grateful for each day and trying to not worry about the things I can’t control. I guess it is easier to look back and be grateful. It isn’t always easy in the tough moments. Those moments don’t seem quite so devastating now that I’ve heard Scott laugh, felt his arms around me and watched him with our children. Now I can really say that it was all worth it!

Overall it's been a good week

After four days with no escapes from the hospital they finally gave Scott a day pass so he could get out for awhile. He is doing much better. The headaches are less intense and he feels generally better. He still has a pretty bad cough but so far it hasn’t progressed to pneumonia. I sure hope it never does!!! Scott is noticeably stronger this week. When he was home last week he always needed me to hold on to when he walked or stood up. This week he only needs my help to stand up from lower chairs and getting up/down stairs. He walked up and down all 6 of our front steps today with help. He hardly ever needs my help walking anymore. Even at the hospital he has so much more independence because he can walk where he wants to go. The occupational therapist fitted Scott for a wheelchair and he uses it to push himself around or to use for balance while walking. It means he doesn’t need a person helping him to be mobile. He can leave his room without help!!! He is so much closer to coming home. The only real setback this week has been the delay in putting in the peritoneal dialysis line in his abdomen. They won’t do it until he finishes his antibiotics in about a week. After they put it in it will be at least 2 weeks until it has healed enough to use. So Scott continues with the hemodialysis and the unsightly temporary line in his neck. It still feels like baby steps some days but at least they’re in the right direction!

Speed Bumps

Just when I felt like we were cruising along the road to getting home at a decent pace we hit a speed bump. I’m not exactly sure what everything means or how much it is slowing the recovery down. Yesterday Scott was feeling pretty crappy in the morning. He was vomiting and could hardly stay awake. He has complained about terrible headaches at night for about a week and they kept getting worse. The cardiologist and nephrologists happened to do rounds on Scott at the same time so they consulted and ordered a CT scan. Scott had the scan and an MRI later in the afternoon. He was feeling much better by the evening. He seems to feel much better after sitting up for awhile and moving around.
This morning Scott went to dialysis and he said he slept most of the time and did not feel very well or energetic. The nephrologists gave Scott the news that he has sinusitis(inflammation of the sinuses) and that’s probably what’s causing the headaches. Scott’s blood oxygen saturation(SATs) was also down significantly and they are concerned about fluid build-up around his lungs. He’s had this for awhile now but it seems to be worse today. So Scott is on 2 new antibiotics – one in case he is developing pneumonia in his lungs and one for his sinusitis. When I saw him this evening he was doing a little better and his SATs were much better.
If it isn’t obvious, Scott didn’t come home yesterday or today. His minor surgery to insert the peritoneal dialysis line tomorrow has been put on hold until these other issues are taken care of. So I need to be patient again. I’m getting tired of speed bumps. I just want Scott to be better NOW! Hopefully these new issues don’t slow things down too much. We’ll just have to wait and see.

Home again, home again, jiggety jig!

It has been a great weekend! Scott has left the hospital four days in a row to come home or to my parent’s house. It has been such an uplifting experience for him to be out of the institutional setting. He isn’t any more tired than he is staying in the hospital. If anything I think he feels better being out. It was also great to go out socially on Saturday night and be with so many friends at a birthday party!
Every time I drive Scott back to the hospital I’m wondering to myself “Why is Scott in the hospital again”. I have to think about it to get an answer. He still needs a lot of help. But I can do so much of it now. Stairs are still an issue. However, he is going up and down 3 stairs pretty well with help now. If I was able to be near Scott 24/7 I think he could come home today. I don’t think it’s possible to do that yet. I still have 4 kids to get here and there and groceries etc. So we might have to wait a bit yet.
It’s weird for me because I haven’t spoken with a doctor in a week. I haven’t been at the hospital much. They have seen Scott a few times though. This whole dialysis thing is still a drawn-out affair. He is still getting hemodialysis through his neck. Early this week Scott had over 3L of fluid drained from his abdomen with a needle. That helped him feel quite a bit better. They want to see how fast his abdomen fills again. If it doesn’t fill quickly they will feel better about putting the peritoneal dialysis line in his abdomen. I guess the procedure is scheduled for Wednesday but the surgeon still needs to examine Scott before there is a final go-ahead. Who knows when they’ll show up! We’ve been hearing about this for 2 weeks. Scott’s abdomen was pretty big again today so I don’t know what they will decide.
The transplant cardiologists really want the dialysis line out of Scott’s neck so they can do the biopsies in the ‘echo lab’ rather than the ‘cath lab’. I guess the echo lab is much easier and Scott can recover much quicker. If Scott can have the peritoneal dialysis line inserted he can eventually have dialysis at home during the night instead of traveling to the hospital 3 times a week. So we’re hoping to get the green light for the abdominal dialysis line this week. If the kidneys would just get to work we wouldn’t have all of these dialysis issues! If only….I shouldn’t go there. We should just do the best we can with what we’ve got right!?

Time at Home

I'm embarassed to admit that I just figured out how to put pictures in the main part of the blog this week. So I might go a little overboard putting pictures up. Yesterday Scott came home for the first time since before his transplant. We were worried about him getting into the house because stairs were an unknown challenge up until this point. We have 6 stairs to get to our front door but only 3 stairs up to the back door. Scott was able to get up those 3 stairs with some help. He isn't supposed to use his arms very much because his sternum isn't completly healed. He needs quite a bit of help standing up and going up stairs. He did do better than I thought though.
It will be the most help when Scott can get out of bed without any help. He's getting there. Sometimes I hardly support him at all and he's able to stand up. Sometimes he needs more help.
About coming home - It has been wonderful!! Scott says food tastes better at home. He has reasons to move and do things at home. It isn't nearly as cramped with 6 people in our house as it is in his hospital room. It's even nice to be in the car going back and forth. There's a reason to get dressed. The plan is to come home as often as possible. When Scott can do a few more things without help I think he'll be able to come home for good! However, I will make sure I don't lock us out of the house next time. Today we had some extra time in the backyard that wasn't planned. At least the weather was pretty good!
We watched a movie together and just enjoyed being a family. It feels great to have a bit of normal back in our life:)

Visiting with the kids

I take the kids to the hospital a few times per week. It is a lot of work for me but it's great for Scott and the kids. Thomas begs me to let him come to the hospital every chance he gets. I think it's because Scott's room has treats in it, he gets to ride the elevator and everyone tells him how cute he is! Today I brought 3 out of 4 kids with me. Sam was at cubs so he didn't come. Scott's nurse, Casey, let the kids listen to their hearts with his stethescope. They loved it!