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!

More about kidneys - again!

Another zero biopsy! That’s 5 for 5. Can’t get better than that. I’m feeling really positive today. I know that Scott is improving. It is still uncomfortable for him to have all of this fluid retention. He is a bit frustrated because he was told that a heart transplant would resolve the annoying and sometimes painful bulging and tightness in his abdomen due to excess fluid. Now it seems like his kidney failure is keeping it going.
People keep asking how his kidneys are doing. That is a hard question. They are definitely NOT functioning as normal kidneys do. Normal kidneys clean toxins from your blood, regulate amounts of postassium and other substances in your body and get rid of extra fluid in your body.
All of the extra stuff is filtered through the kidneys and out of your bladder as urine. Since the transplant many doctors have discussed Scott’s kidneys with me. Early on they were very optimistic because Scott was still peeing a little. If kidneys don’t work at all – you don’t pee AT ALL. So they were working a little bit. They also measure creatinine and urea levels through blood tests. Your kidneys get rid of these substances from your blood. Blood tests are taken and these levels are measured. If kidneys are working these are kept at low levels. If the levels keep rising it means the kidneys aren’t clearing them out effectively.
I keep hearing that the kidneys are amazing at recovering. They sometimes don’t work for months and then, miraculously start working again. I do think that this is the exception not the rule. The more time that goes by the less chance of the kidneys recovering.
About 2 weeks ago Scott stopped peeing altogether and his creatinine jumped up suddenly. Scott had become dehydrated and his kidneys had nothing to work with. Scott was told to drink at least 2L of fluids a day to give his kidneys plenty to work with and every chance to recover. His urea levels have dropped this week and they say that the creatinine levels usually follow. He has been peeing a bit more too. That is a step in the right direction. Is it enough??? It is a waiting game just as it has been for the last 2 and half months. I’m so interested in how much Scott pees and his creatinine and urea levels and how much extra fluid he has in his body. Hopefully it won’t matter soon! I certainly continue to pray for a return of kidney function and I appreciate all of you who have done the same! Let’s keep at it!

A Happy Easter

Scott was allowed to leave the hospital today! Not for good but for about 5 hours. I picked him up after church and brought him to my parents house. They live in a bungalow and they even have a lift so Scott didn't have to climb any stairs. Thanks Mom and Dad!!! Scott had turkey dinner on real plates at a real table in real clothes! After he sat in a nice chair surrounded by family. It was great that he wasn't in a bed for over 5 hours. To me it seems like a glimpse of what is to come - Normal!! Earlier in the week Dr. Isaac, one of the transplant cardiologists, told Scott that she would love to give him a pass from the hospital every day if he can handle it. I'm thinking he can handle it. He got in and out of the van fairly well. He did need a wheelchair from the car to the house and the hospital room to the car. He is still building stamina but it is coming.
I would put on pictures of a great day but Scott is feeling better enough to NOT like his picture taken. He doesn't look his best yet. He still has that irritating dialysis line sticking out of his neck and his face is puffy from the steroid, prednisone, and fluid retention.
Back in the ICU Scott was too drugged to mind me taking pictures. oops. Now he's getting back to himself and his vanity has returned (just kidding).
Tomorrow we meet with the peritoneal dialysis nurse for some teaching. Hopefullly the surgical consult for the abdominal line will be done soon so we can move forward there. Not much gets done on a long weekend. Tomorrow we should find out Thursday's biopsy result also - again weekend waiting.
I look forward to many more good days. It sure has been nice to take Scott outside in the wheelchair and enjoy the sunshine every day this week. I've even brought the kids along for walks to grassy areas around the hospital so we could watch them run and play. The hospital room gets pretty croweded with our family of six!

What's New?

What’s new with Scott the last few days? He is still in the hospital and really not liking it. With everything he’s been through I can’t blame him for getting fed up! The transplant cardiologists say that Scott WILL have the great quality of life they talked about before the transplant. It hasn’t happened yet but it will in time.

Long-term arrangements are being made for dialysis. So far Scott has had ‘prisma’ dialysis in the ICU and Hemodialysis since the transplant. The prisma was done gently all of the time. The Hemodialysis is done at the hospital 3X/week for 4 hours at a time. The concensus seems to be that Scott should have Peritoneal Dialysis now instead of the others. This dialysis can be done at home 4X/day for 20-30 min. each time. It is gentler and requires less diet restrictions. The infection risk is less, especially for a heart transplant recipient. It isn’t for sure yet. They need to assess whether Scott can have the line inserted in his abdominal cavity. That’s where peritoneal dialysis is done. Instead of taking blood out of the body to clean it, fluid is added to the abdominal cavity and filtered through the abdominal wall(peritoneam) and then drained. At least he’d be able to have the line in his neck removed!

One bit of good news is that we have planned for Scott to get out of the hospital on Sunday for Easter dinner. It helps that we’re going to my parents house which is handicapped accessible. Scott hasn’t tried to go up/down stairs yet so he’s not ready to come home quite yet.

Tomorrow Scott has another biopsy after his hemodialysis. Maybe his last hemodialysis?? It will be a very busy day.

A Change of Seasons

Sunday, April 5/09
The days are just beginning to warm up. Winter has been hanging on here but It is finally showing signs of spring. The snow is melting and the sun is shining. I guess I feel like this long, difficult experience that Scott and I have had is finally showing signs of ending just like the winter. Scott has been in the hospital for the entire winter. He was admitted to the hospital on November 13, 2008. At least he only missed a long, cold, snowy winter. It looks like he might be able to come home and enjoy the change of the seasons - literally and figuartively!
I have asked the doctors what needs to happen before Scott can come home. He needs to be stronger, eating well and moving well. That is coming bit by bit. His immune system needs to be at acceptable levels - it's gradually getting better. It would be nice if his kidneys started working but he can come in to the hospital 3X/week for dialysis. He doesn't need to be an inpatient for that. So, without further complications, I really feel that Scott is really on the homestretch!
Today Scott was dehydrated from not drinking enough and days of stomach troubles but he really worked hard at drinking and eating better today. He also asked me to help him get up and walk yesterday and today because the physiotherapist doesn't work weekends. He did great! It is easy to measure improvements when you walk a certain distance. It is coming. The new heart is great! It will just take time now. I just wish I knew how much:)

One Step at a Time

The days keep ticking by. I can see Scott getting a little bit stronger as time goes by. He is able to move himself a little better every week that goes by. He is walking short distances with only a little support now. It is still a big effort but I can see the improvements.
Scott seems to be about the same or maybe worse as far as kidney function goes. The problem is that his stomach issues are persisting and getting rid of fluids through other avenues(not the kidneys). The dialysis is still going on. Scott went to get a permanent line for dialysis put in yesterday instead of the annoying, floppy, temporary one in his neck. Unfortunately, due to Scott's anatomy they couldn't do it where they wanted to so it didn't get done. I'm not sure yet if there are other options.
I forgot to note that last week Scott had another biopsy with ZERO rejection! Thank goodness something has gone smoothly so far. Scott's white blood cell count was up a little yesterday also, which is good. The 2 issues now are kidneys in the long term and "the runs" in the short term. There would be very little to complain about or be in the hospital for if it weren't for those 2 things. So we'll just keep praying like everything depends on the Lord and working like everything depends on us!

Easy Button??

Wednesday Apr.1/09
New developments the last few days. Scott has some sort of bug that's causing some stomach problems. For most of us it's a hassle and uncomfortable to have a stomach flu but it's a lot more problematic for Scott. Because of his heart failure before the transplant and the traumatic events during and after the transplant Scott's strength reserves are very low. Scott is also immunosuppressed which means that his immune system is compromised significantly. He is getting medications for the exact purpose of suppressing his immune system so that his own body doesn't attack his new heart. That means he is exremely suseptible to any bacterias, viruses and other infections. The doctors even say that Scott's immune system is lower than it should be even for a transplant patient. I hope that this 'bug' quickly runs its course and Scott isn't too compromised by it.
Yesterday afternoon Scott was put on isolation status which meant that everyone that went into his hospital room had to wear a gown, mask and rubber gloves. It was hot, uncomfortable and annoying but I did it! Then, today when the doctor came in and saw me in the surgeons getup he said "Why are you wearing a mask?" It didn't take me 2 seconds to take it off and chuck it! I still had to wear the gown and gloves though.
I guess we need to expect these setbacks. I just hope there aren't too many of them and that the steps forward are bigger and happen more frequently than the steps back.
The doctors have told Scott to eat more protein. They suggested a big steak! How do I keep a steak good to eat from home to the hospital with only a microwave at the hospital? I'm open to suggestions. Scott did say he'd rather have shrimp tomorrow so I'll work on that. I sometimes feel like a restaurant with a very extensive menu, a microwave and plastic utensils. Mmmmmm doesn't that sound easy! I know it sounds like I'm complaining a lot and maybe I am. I often have to look back and see how far Scott has come to be grateful for these new, small problems. I do think I'd like the "easy button' from the staples commercials though. It might get worn out from excessive use so I guess I'll just smile, laugh, hug my family and carry on:)