The beginning...A lot of people have asked what happened and why Scott needs a heart transplant. I tried journalling a few weeks ago. I think I'll put myself out there and post my first few entries. They are pretty personal but answer most questions. It's pretty lengthy but don't read it if you don't want to. It was a pretty tough time. Here it goes:

Nov23/08 I am writing down my feelings hoping it will be a cathartic experience. For the past 9 days Scott has been in the hospital. He was born with a heart problem and had 3 open heart surgeries in his childhood. His last was when he was 15. Fortunately he had 21 relatively healthy years where he was able to live a pretty normal life. A little less than a year ago Scott really began to feel his health decline. The cardiologist, Dr.Prieur, tried new medications and tinkered with doses, hoping to improve Scott’s heart function. After months of trying this with little positive result, Scott and I decided a lifestyle change was the only option to us. Instead of a continuing the demanding job with 2-3 days per week of travel, Scott talked with his employer about working from home most of the time. We were so grateful that his work would allow him to do so. He began working from home in early October. In the meantime his cardiologist discussed surgical options for Scott with the heart surgeons in Edmonton. After this discussion he called us in for an appointment the next day. Scott and I were quite surprised at the quick appointment and were a little nervous. Dr. Prieur told us that a surgery to repair Scott’s heart didn’t have a good enough chance to succeed to take the huge risk. If that kind of surgery didn’t succeed it could leave Scott in much worse shape that going in. So we were disappointed to hear that we had one less option. However, Dr. Prieur told us that the next step would be to explore heart transplantation. We discussed a little about what that would mean and he sent us home with an appointment to see a heart transplant team near the end of October. At this appointment we heard more of what a heart transplant would mean. We had no answer whether this was the right option for Scott, only an appointment for the first of many tests to determine if a transplant would be the best thing to do. I had the impression that the process of getting on a transplant list would be months long. It was over 3 weeks away that the first test was scheduled. I guess I was wrong. A week after the transplant appointment Scott was scheduled for a hernia repair surgery. He was seen by a few doctors prior to this surgery to ensure his heart medications – especially blood thinners would not cause problems during or after the operation. The surgery went well with Scott coming home the same day as expected. As with any surgery he felt pretty sore and tired afterward. He slept most of the day for the next 3 days. He didn’t eat or drink much. On the Thursday night, 3 days post surgery I left Scott asleep on the couch with Ben in charge of his siblings while I went to a church meeting. When I returned home at about 9:30 my brother was at home and told me that my dad had taken Scott to the Emergency at the hospital. I rushed to the hospital where Scott was eventually taken in because of chest pains.Scott was poked and prodded and hooked up to a lot of stuff. I heard many numbers about things like blood pressure, CBCs, creatinin, blood oxygen, hemoglobin, platelets etc. They were concerned about a blood clot due to the surgery but were most concerned when his creatinin levels were very high. This has something to do with kidney function. So they gave Scott some IV medications to increase his fluid intake, raise his blood pressure and thin his blood. They decided to admit him to the Cardiac Intensive Care Unit. By Friday afternoon he was in the CCU. He was so weak and tired. He was also given a blood transfusion. I was so worried. He had so many tubes and machines around and attached to him. The next day was Saturday. Scott’s parents arrived from Utah to help with the kids so I could spend time at the hospital.It all seemed so sudden. Even though there had been a gradual decline of health it was such a dramatic change in a short period of time. I began to feel really scared. I stayed in the Emergency with Scott until 2am after they decided to admit him. I phoned the heart transplant clinic, his cardiologist, his parents and the Relief Society President first thing in the morning. Then the ball began rolling. The transplant team started the long list of tests needed before a transplant. These tests went on for days while Scott started to get better – his creatinin gradually declined to a normal level and he was taken off the IV medications. Then on Tuesday he was officially well enough to be transferred to the regular cardiology unit in the hospital.Scott continued along but was still sore and uncomfortable from the hernia sugery. He was also retaining a lot of fluid in his abdomen area. He started to look like a pregnant man. It was sometimes very painful and he needed strong pain medications to get through it. Day by day the doctors kept monitoring Scott and noticed his creatinin was steadily climbing again. On Saturday they decided he needed to go back to the CCU. I was grocery shopping and picking out the foods that Scott might want when he got home when my cell phone rang and a nurse told me Scott would be moved up to the CCU. It just felt like such a step backwards. I talked to the bishop that afternoon and he decided to start a ward fast for Scott. It was such a humbling experience to need so much help. I really just wanted Scott to come home and he just wasn’t getting better. I talked to Scott about the fast and he was really touched by the outporing of love.

Nov.25, 2008Scott is still in the CCU. He is now officially on the list for a heart transplant. He is a status 3 out of 4 – 4 being the sickest. We really hope that he can get a new heart in days or weeks. The doctors say he’ll probably be in the hospital until he gets the transplant. This is so difficult because I miss him so much. The kids really miss him too. He is confined to bed because of all the machines and tubes attached to him. He is not liking that much! He had a few really rough days on Saturday and Sunday. So did I. I felt like I was unravelling. I was so weepy and cried harder than I ever remember crying. I pleaded with Heavenly Father to let Scott stay and get better. I was more desperate than I have ever been. I felt distant from my kids, and everyone around me. I began to feel a despair that was foreign and disturbing to me. I was falling apart. The next morning when I got the news that Scott was officially listed I felt some of the weight and worry lift off my shoulders. At least something was being done.Scott could see the difficulty I was having (I cried a lot). Even though he was in the hospital he took care of me. He got a phone and called our Stake President, President Miller. He asked him to give me a blessing and asked my dad to come with me and help me. Today I met with him, received counsel and a blessing. I am starting to feel more at peace. I don’t worry every second about what I would do and feel without my husband. I didn’t cry too much today. I feel that Scott can hang on until a new heart comes. I am trying to imagine life with a new heart for Scott. We’ve told the kids that Dad might be able to beat them in a race after a transplant. Maybe we can go on family bike rides and long walks. Maybe Scott will be able to hold Thomas on his shoulders. We can hike in the mountains and maybe Dad can learn to keep up with Ben and Sam on skis! I have such high hopes for the future! I wish I could see what November 25, 2009 will look like for our family.

Dec.8 Scott is doing well today. He is stable, his kidneys are doing great and he's in pretty good spirits. I visited him this morning and the doctors are increasing his time off the dopamine to 3 hours/day from 2. He is doing physio off the dopamine now every afternoon. There's not much point in visiting him from about 1-2pm because he's in the basement working out. I wonder if they left his chair with pedals in his room? When Scott is off the dopamine for 4 hours in the controlled environment of the hospital and all goes well he should be able to come home for 4 hours at a time. I'm trying not to get my hopes up too much becuase i thought he'd be home weeks ago.I just hope he can be home at least for awhile at Christmas! The only thing better would be if the heart transplant happens before then. That's what I keep praying for. We're trying to be prepared for a long wait, maybe 6 months but I really want a heart to be available soon. It's not fun for Scott being in the hospital and I'd rather have him at home too.I'll try to update news every few days but it might get boring if things stay as they are so hope for more exciting news!

Dec.10/08 Not much news today. Things are still the same. I thought I would let everyone know what might happen with a transplant. When a heart is donated that is Scott's blood type and size the donor program people contact Scott's doctors and they decide if the heart is good enough. If it is, Scott will be transported from Calgary to Edmonton immediately. There is usually only hours before Scott needs to be ready for surgery. Sometimes a patient will get there and be ready and the surgeons decide the heart is not optimal. Then the surgery doesn't happen and it's called a "dry run". soomeone else from Calgary had a dry run last week. I hope we don't have to go throught that!The doctors say the surgery is pretty straightforward but Scott has a few extra complications because of his prior surgeries. They'll just try to be prepared for them. I'll go up to Edmonton when I get the call and stay until Scott comes back. They can't say for sure but we're hoping he'll be transferred back to the Foothills in Calgary about a week after the surgery and finish his hospital recovery in Calgary.Hopefully in 2 or 3 weeks post-surgery Scott will be able to come home. He's already been in the hospital for 4 weeks so that doesn't seem too bad.The recovery is difficult because Scott will be on high doses of anti-rejection medications which have some tough side effects. He will have physio and heart biopsies frequently at first but they will gradually be reduced over time. He will remain on immunosuppresant drugs for the rest of his life but the doses will be reduced as time passes with no rejection.These can be the difficult aspects of transplant but the benefits can be huge. Some patients who have had heart problems all of their lives feel better than they ever have after a heart transplant. That's what I hope for Scott! Thanks for all of the help and prayers. Scott is amazed at all of the support too. He says he never wanted to have a group detailing his medical troubles but he appreciates all those who care about him! Maybe I'll get him on facebook- he has the time:)

Dec.14/08Today was a good day! Scott has done pretty well off his IV medication for 3 hours/day this week and the doctors let him come home today for 3 hours! He put on clothes and braved the -30 temperature to do it too! It was a nice change and the kids were really happy to show Scott the Christmas decorations and play their instruments for him. Scott did pretty well but was tired and cold. Just like before he was in the hospital. Maybe if all his bloodwork shows no negative efftects from an excursion he can do it a few times a week. It's looking good for Christmas!!

Dec.17/08Yesterday and today Scott had a few awesome visitors at the hospital. We met Norm and Karen. Norm had a heart transplant 7 years ago and they had young kids during the time Norm was in the hospital. He's doing amazing now! What an inspiration. We also met Jamie who had a heart transplant 4 years ago and is playing hockey all the time. It's incredible! I don't expect Scott will play hockey but they both described the amazing difference in energy and strength before and after the transplant. I am so encouraged and can hardly wait for Scott to feel the same way! Thanks to everyone who has visited Scott! It's great to see your faces and feel your support. If you are thinking of visiting but don't know if you should - Come on over. Scott is totally himself just stuck in the hospital and really enjoys visitors - it breaks up the boring day.

Dec.22/08Time keeps passing. It feels like it's dragging but Scott put things into perspective today. He said that every day we wait is another day of life for someone else. It makes it hard to complain about waiting when I think of it that way. On Dec.24 it will be one whole month since Scott was put on the transplant list. On the 25th it will be 6 weeks in the hospital. Scott has left the hospital 4 times to go home, visit with family and see some of the kids Christmas recitals. He's known in the hospitall unit as the only patient who can walk around and the only one who can leave for awhile. It really helps for him to get out a bit. Even though we're stuck in this horrible deep freeze. We have to have a warm vehicle waiting for him. He's cold at the best of times - let alone thirty below!! The plan is to get out Christmas Eve and Christmas Day for 4 hours each time. It beats bringing the family to the hospital and kids playing on the hospital floor - YUCK!!I just want to thank everyone who has helped our family and continues to help us. I know there are many praying for us. I'm grateful for the meals, childcare, rides, goodies, snow shovelling, cards... and so much more. I feel blessed every day to be surrounded by such amazing people. I don't know how I'd do it otherwise. THANKS!

Dec.27/08Scott was out of the hospital for awhile on Christmas Eve and 8 hours on Christmas Day! It was wonderful to have him home. He was feeling good and really enjoyed being together with our family. I did get confirmation that there is a reason for Scott to be in the hospital. The main reason is to keep him on IV dopamine which raises his blood pressure so his kidneys get enough blood to function well. His heart just isn't pumping well enough on its own. One way kidney function is measured is by a blood test checking creatinine levels. Good levels for Scott are around 100. As Scott has had dopamine breaks of increasing time his creatinie kept increasing by a bit. Before he had his 8-hour break Christmas Day they'd climbed to 124 and after Christmas day they jumped up to over 150. I guess the dopamine is what he needs. The docs really want his kidneys in good shape before the transplant because the meds after the transplant are hard on the kidneys. That's the main reason he's in the hospital besides being tired and weak.I hope that he can get out for breaks again at some point. We both really liked the change of scenery from the hospital unit.I guess we'll just keep trying to be patient(I'm getting tired of that word) and take things day to day.

Jan.1/09The last couple of days have been hard. Scott is not doing as well as he had been. He is more tired, has less appetitie, and is generally weaker. His blood pressure is lower than it has been - even on the dopamine. His heart is having a harder time. The doctors have been adjusting his other medications to try and increase his blood pressure but so far had little success. He was supposed to get out for a few hours on New Years Eve and come home. Because he wasn't doing very well it was decided that that wasn't a good idea. Instead I took the kids to the hospital and we had a little party in the waiting room. It actually turned out to be fun. Not the ideal New Year's Eve but at least we were together as a family.I've enjoyed having the kids home from school and no schedule. I'm not looking forward to Monday when the schedule begins again. It makes it harder to see Scott in the hospital and harder to get everything done. My kids are actually excellent helpers around the house and I'm going to miss them. I have high hopes that 2009 will bring many positive changes for our family.

Jan.5/09The waiting continues. Unfortunatley it isn't going very well. Scott is definately not doing as well as he was. He is more tired and sleeping a lot, except when he'd like to at night. He has sleep apnea which is greatly worsened by his heart failure.He also has no appetite. He's hardly eating and he doesn't even want to. He's also getting discouraged and frustrated. The worse he feels, the harder it gets.Today the doctors increased his status on the transplant list to 3.5 from 3. Now the only people ahead of him are on life support. The problem is that he doesn't get the next heart necessarily. The heart has to be his blood type and size. That's the hard part. I guess it's good to get higher on the list but it confirms how poorly Scott is doing. A new heart is what he needs. The medicinal options aren't working as well as they were. Sooner is better!!!!Every night before I go to sleep I put the phone by my bed hoping it will ring with good news. Maybe tonight will be the night.

Jan.6/09Today is a much better day! Scott's medicines have been changed and adjusted and so far so good. His blood pressure is better, his heart rate is better and even his appetite is better. All of these things add up to a more positive attitude and outlook also. Phew! Hopefully this lasts. I suppose there is one good thing that came from this difficult week - Scott is a higher status now and more likely to get a heart sooner. I just hope there aren't any negative effects from all of the junk food I keep bringing him trying to get him to eat. Like pastries, sausage rolls, slurpees, chocolate, cheese, brownies, chips , cookies and anything else that I thought might tempt him to eat. I don't feel bad about the Costco size bag of M&Ms I brought to him. The dietician said they're good for him because he gets calories and even protein from the peanuts! No one ever told me it's okay to eat M&Ms!!I hope today isn't an anomaly but a trend!

Jan.10/09Scott is no longer on dopamine. Over the last week they gradulally decreased the dopamine and increased another drug called Millrinone. sp? Now he is only on Millrinone. Because of that he no longer has to be in the CICU. He was there because the staff had the needed training in dopamine. Now he is where the staff have the needed training in Millrinone - unit 81. The change of units is the biggest change from Scott and my perspective since he's been in the hospital. There is not a big medical change but a change of scenery and staff and restrictions is huge!Scott is no longer attached to the heart monitors on the wall. He can now get up and walk around whenever he wants without having to ask. He was originally put in a room with 3 other people but later in the day was changed to a private room. I haven't been there yet but I'll bet it's 100 times better!! Now he has his own bathroom and can rest quietly when he needs to. The only bummer is that now we have to pay for TV. It was free in the CICU.Maybe this change will be a good one. Scott was just so happy for a change of scenery. He was on the other unit for 8 weeks. Hopefully he'll spend less time on this one. There is someone else on the unit who had a heart transplant just before Christmas and is going home Monday! Maybe that will be us soon.

Jan.14/09Today it has been two months for Scott in the hospital. The last week has been a big improvement. The new unit and private room seems to be much better. It is quieter, there's more privacy and walking around is easier. Scott can now go to the kitchen and warm up his own food.He still has to take his IV pole wherever he goes but he's getting used to it. He takes his heart monitor along with him in his pocket and is monitored at the nurses station. That's much better than being attached to the bed!I've really noticed a huge change in Scott's attitude and emotional state. He's still not happy to be stuck there but feels so much better! He has had lots of great visitors which always helps too. He's gotten to know his hospital neighbour who had his heart transplant just over 3 weeks ago. He gives Scott some great pep talks and hope for the future. Their offices are really close and they are already planning lunches when they're both back to work.Scott is eating well again and I think this new medication is working well for him. He still has the issues with fluid retention and fatigue and wacky heart beats but he's otherwise comfortable and coping well.We broke down and ordered the TV and phone service. If you'd like to call Scott in his room email me and I'll give you the phone number. I hope Scott's condition stays level until the transplant. Boredom is much easier to handle than feeling terrible. We can manage much better this way!

Jan.18/09Scott has been doing pretty well the last few days. He has been getting stir crazy though. Yesterday he told the doctor that he was going nuts in the hospital and the doctor said, "Well, it's a nice day, why don't you go out for 2 hours!" We weren't expecting that but we took advantage of it!We went to Red Lobster for lunch. It was great. We sat in a sunny booth and ate hot food and felt like normal people living a normal life! Going out to eat has never been better! We look forward to a normal life again soon.

Jan.21/09The days keep passing. No big news yet. The transplant team told us that their team has only had one transplant since the summer -and they cover all of southern Alberta. They said that suitable organ donors are fewer in Canada than other developed nations due to our more strict helmet and seatbelt laws. Good in general but harder for us.This waiting and being stuck in the hospital is taking its toll. Scott is having some bad days when he's not very pleasant and pretty down. It's been a tough week for me because I've had sick kids. Scott told the doctor that the hospital is noisy, smelly and ugly and he's tired of wearing pajamas. The doctor said that his mental health is important too so he can go off his meds for 2 hours a day as long as he's up to it. That really helps because every day he can plan something to do and have something to look forward to. He came home for supper yesterday and came home this afternoon. I'm feeling it is stressful for me because I go back and forth to the hospital more and I feel like a nag reminding him he needs to go back when he has only been out for a short time. I think he might just 'lose track of time' and never go back if it was up to him!I guess I'm a bit overwhelmed right now. Thank goodness for the help I get, otherwise i think I would have cracked a long time ago!!! I try to count my blessings. Today I went to the mailbox and found some encouraging and funny cards in the mail, one package, one chequie and no bills! I'm grateful that Olivia threw up on the couch and not in the van(I think). I'm glad that I haven't gotten hives or the flu. I'm happy to know that there's a light at the end of this tunnel. I just hope the end is near!

Jan.23/09 Blah! That's how I feel today. Today Scott was moved back to the Cardiac Intensive Care unit. It's hard to describe how I feel about it. The good news is that Scott looks and feels as good as he ever has in the hospital. It seems so unnecessary. However, Scotts' creatinine levels are again getting too high so they would like to put him back on dopamine and see if that fixes the problem. There are familiar faces, places and routines there, but there are also familiar restrictions.Today Scott wasn't allowed to leave his bed as he needs to be constantly hooked up to the heart monitor while his meds are changed -AGAIN! And no more escapes from the hospital for awhile. That's the BLAH part! There is no knowing how long he'll be on that unit. If the dopamine does what they want I suspect he'll stay there. If it doesn't, I don't know what the plan is.

Jan.27/09 The dopamine is working! Scott has lost 4 kg in 4 days - all fluid. That's good. He was so bloated before. His creatinine is down to good levels again and he feels pretty good. He's eating(too much junk) and sleeping well too. Over the weekend Scott was very restricted in the CCU because he had to stay hooked up to the heart monitor on the wall. He could walk around the bed as far as the cords would reach but that's it. Now he can get off monitor whenever he wants(resaonably) and he can even go off dopamine for 30 minutes/day and have a shower with nothing attached to him! It's amazing what you are grateful for at times like this! Scott actually prefers this unit mostly because it's much warmer there. With his poor circulation he gets cold really easily. I am good at getting the warm blankets now! Sometimes I want a blanket warmer at home.It's also a good week because no one is sick(so far) except for some runny noses. The kids haven't seen Scott in a week. They are really starting to miss him. I'm hoping to take them to see him tomorrow. People ask me how the kids are dealing with their dad in the hospital. When we first discussed a possible heart transplant with the kids in early November there were mixed reactions. Ben was very interested in the facts and logistics and asked a lot of questions. Sam was grossed out and covered his ears. Olivia and Thomas didn't really understand - especially Thomas. Sam is a very emotional kid and was very concerned when we talked about where a new heart might come from. He said to me, "Mom, if the Incredible Hulk dies, tell dad not to take his heart, it's toxic!" And he was serious! He's also the one who has nightmares that we go to the hospital and the nurse tells us that Scott died. It's hard on them too. They especially miss having time with their dad. It's really hard to get one on one time in the hospital as it's against the rules to have them there without another adult and it's so hard to take them individually. Olivia has loved all of the attention from babysitters, especially the young women from the church but Thomas misses me when I leave at some point every day. But we are all managing. They all are getting opportunities to be more responsible and help each other and around the house more. I think that's a good thing. They really are good kids. I'm lucky!!

These are the massive messages i sent out On Friday, January 30,2009:
Subject: Friday morning

Last night, after after 19 hours in the operating room i iwas finally able to see Scott. he is hanging by a thread. There is a new major complication of bleeding and they're trying to get it under control. his new heart is still not working well. he is in the ICU and has 2-4 nurses working on him at any given time. Please pray for a miracle! First we need the bleeding to stop, then his heart to work and then hope that there aren't any long term effects. It will be a long and difficult road but one that I'm really hoping to take!!!!! I hope that when I go back to the hospital this morning there is some improvement.

"Subject: Friday evening update
It seems like a week since Scott was called for the transplant but it's only been 2 days. Scott is definately better today but not out of the woods yet. The bleeding is much better which is a small but very important step in the right direction. Scott had another 4 hours in the OR this morning to clean up and try to stop the massive bleeding in his chest. Thankfully it seems to have worked. Please pray that it continues to work. If the bleeding stays stopped we go on to other hurdles of whether or not the new heart will work and what to do if it doesn't. It's a very long explanation but i trust the amazing medical staff who are caring for him. They do have plan but there are many things that could still go wrong so they are very cautious about a prognosis. But he is so much better than yesterday.

"Saturday evening - Jan.31/09Today was a pretty even day. The plan was to keep Scott stable and let his body rest and recover somewhat from a very traumatic experience. They monitor everything and make changes frequently to keep many things at acceptable levels. but nothing major was done today. The bleeding is still at acceptalbe levels(normal for any surgery) and there are little glimmers of hope that the new heart might work when the artificial heart machine is stopped.Tomorrow morning Scott is scheduled to go back to the OR where they will check on the bleeding and look at the heart. After that decisions will be made whether or not this new heart can be tested or if an artificial heart should be used. it would be a much smaller version of the one he has now, probably a Berlin heart, and he could even go home with it when he recovers. if he does need an arificial heart he will eventually need another transplant. There is a long road ahead! I hope there are no other difficult complications tomorrow but i know that Scott has exceptional care here in Edmonton. I really hope the new heart just decides to work but even if it doesn't there are other options - just longer and harder ones.Scott is definately still critical but little improvements have happened.

Sunday, Feb.1/09This is Andrea, Melanie's sister.It has been a rollercoaster day and melanie asked me to update everyone.It started off as a great day. Melanie called the hospital first thing to see if Scott had gone in for surgery and he had been bumped. The nurse said that he was responding though, so we headed right to the Hospital. Melanie and Scott were able to communicate with eye blinks, hand squeezes and head nodding. It was wonderful to see them together and feel the love that they have for each other!! There were also signs that the heart may be working a little more.Scott went in to surgery around 12:30, and we settled in for a long wait. They were planning to clean him up a little as he still had some packing in his chest, and see how the heart was looking. Two hours later when Melanie was out of our "waiting room", the surgeons came in. I ran to get Mel and we got the best news! The surgery had gone better than expected. They cleaned him up and decided the heart looked good so they slowly took him off the heart machine..and the heart looked great and it did so well they took him completely off the machine and closed up his chest. We were all amazed and excited.He was back in the CICU in half an hour and he looked great with less machines!! He was groggy, but still responsive.Melanie was sotired after the good news. She decided that she would see Scott one more time then get some sleep. She tried to see him, but the nurses said to keep waiting.for an hour and a half. it turns out that he started to bleed a little bit again,and had to get some more blood. The bleeding is slowing down and it is nothing like it was. The next 24 hours they will be watching him very closely and the bleeding is slowing down. please continue to keep him and Mel in your prayers.

Monday Feb.2/09Today was good. It seemed like today was like what it should have been the day after the transplant. Scott still has a breathing tube in and stuff up his nose from when he was bleeding but he is awake. He nods his head and tries to spell things with his fingers. Poor guy. It took him 5 minutes for me to figure out that he wanted a drink - and then he wasn't allowed to have one. He's had his mouth open since Thursday morning -ugh!! He really is exhausted and it takes a lot of effort every time he tries to communicate so we try to let him rest as much as possible. I spent most of the day just sitting quietly with him holding his hand. I did see many doctors checking in on him to see how he's doing and they all seem pleased with his progress but still don't say he's out of the woods yet. He is on a machine that is similar to dialysis to give his kidneys some help as they were very traumatized by everything. But they said they were amazed at how long they went before needing some help. Other really good news is that Scott doesn't seem to have any brain damage which was a concern as they didn't know if his brain always had sufficient blood supply. All good news! One doctor said Scott could be in intensive care for a week or two but maybe it will be less. We just have to take things one day at a time now.Thanks for all of your prayers. I know they continue to make a difference!Tuesday

Feb.3/09Today was one of those bumpy days i need to expect. There was some progress and a small setback. Too long to explain but I'm confident in the medical staff. Scott is well taken care of and I have faith that he will be okay. I just wish every day could be easy.Wednesday,

Feb.4/09Another day has gone by. It feels like progress is slow. Scott still has the breathing tube in and is totally exhausted. They did some procedures and tests today that were long and wearing. Scott's new heart is still adjusting to Scott's body. The right side of the heart is not working as well as the left. Scott's heart is being supported through medications and the process of creating the right balance for him seems tedious. He has soooo many blood tests of all types over and over measuring this and that and he hardly gets a moments peace. But i know that it is necessary. That still doesn't make this easy. I can hardly wait to talk to Scott again -rather to have him talk to me. I keep wanting things to go faster than they are but I'm learning a huge lesson in patience. Maybe if i learn it faster Scott could suffer less! I'm trying!!!Thursday

Feb.5/09I guess I never posted how we got the call for the transplant so I'll do that today. Last Wednesday was the day. The head of the Calgary transplant team came to Scott in the hospital at about 5:00 pm to tell him that there was a heart available. After over 2 months of waiting it was a little surreal. Scott called me at home and I organised the kids and quickly rushed to the hospital. I was able to talk with the cardiologist and Scott and we waited quietly at the hospital for instructions. It seemed like forever!! It was 3 hours before the paramedics came to take him to the airport by ambulance. It was a pretty quiet, reflective time for us but it was very good to be together.The ambulance took Scott to the airport where he transferred to air ambulance and flew to Edmonton and tranferred again to an ambulance to go to the hospital. I think he arrived at the hospital around 11:00 pm. After Scott was put in the ambulance in Calgary I drove to my parents house where my dad was waiting to drive me to Edmonton.We arrived at the University Hospital in Edmonton at about midnight. Gratefully I was able to spend about an hour with Scott before he was wheeled into the operating room at around 1:30am.The assisting surgeon talked to me on the way to the OR and told me to be ready for 8-10 hours of surgery. Because of Scott's previous surgeries he was expected to take longer than the 4-6 hours a more routine heart transplant would take.So my dad and i settled in for the wait. The nurse directed us to a private waiting room where we could attempt sleep. There was a little sleep and some pacing and a lot of pondering. At 9:00 am I promptly left that room to wait in the area where the surgeon would come out to find us. My aunt Karen came to wait with us too. I met another family waiting for their brother who was in surgery for a double lung transplant - probably from the same donor. It was difficult staying patient as the hours ticked by. 8 hours in surgery,..9..10..11..12...13. Not a word from anyone. I finally accosted someone in scrubs heading into the surgical suites and asked them if the heart transplant was still there. All I got was that it was still going.At 2:30pm we were led into a room to talk to the surgeon. As I sat down i said "This feels like the bad news room". The surgeon told us that the dissection of the old heart and the "hooking up" of the new heart went smoothly and was done 6 hours before. Unfortunatley the new heart wasn't squeezing/pumping well enough to keep Scott going. He was still hooked up to the heart/lung machine and we would have to wait or an atificial heart might be needed. It was tough news to take. I really expected everything to go smoothly! It was such an emotional blow!We waited again because Scott was still in the OR. At 6:00 the surgeon spoke to us again and told us there was a new problem with bleeding. He said that at about 7;00 Scott would be transferred to the ICU and I would be able to see him an hour after that. So we waited again. Thankfully my dad was there because I started to crumble and time went by again. We kept asking to see him and they kept saying, "call back in and hour". Finally at 11:30pm they wheeled me in a wheelchair to see Scott. I hadn't slept, ate and I think I was in shock. Scott looked white! He was bleeding from so many tubes and they were collecting the blood, cleaning it and putting it back in as fast as they could. My dad gave Scott a blessing and told him that he would be home with his family again. It was hard to believe but i clung to that hope with everything I had. The ICU room was full of people working hard to keep Scott alive. It felt like ER but much, much worse!Wow, this is getting long and I have to go to bed. I'll try to finish tomorrow.I'm back! After I saw Scott in the ICU and the bleeding was still going we left the hospital at about midnight to sleep at my aunt's house. I had my dad sleep with the cell phone in case the hospital called. I did sleep for awhile and woke up about 5:30 anxious about what was ahead but grateful that I hadn't received any call. No news is good news, right!? It was hard to get going to the hospital because I was afraid of what might happen but I eventually got there.When I did get there I went right in while my dad found a place to park. I called the ICU and the charge nurse came out to talk to me. She said the bleeding hadn't stopped and they took Scott back into the OR. She told me to wait in the private room and that it was mine for the weekend. It's not good news to get that room. Then people started to arrive. My dad came in, my aunt, Scott's mom and aunt, and my sister, Andrea.After 4 hours in the OR Scott went back to the ICU. The surgeon talked to me and told me that the bleeding was about 10% of what it had been. He packed Scott's chest to stop the bleeding and left his sternum open but closed his skin. That was good news. Then another doctor, an artificial heart specialist came in the little room to talk to us. He told us about the machine that Scott was hooked up to. It was pumping Scott's blood and giving his heart a chance to get working. It was only a temporary solution because there are many complications associated with it the longer someone is on it. He told us that Scott might eventually have a smaller version of the artificial heart if his new heart doesn't work. It was really good to get information and know that there was a plan. They did say that Scott was very, very sick. I heard that a lot! But at least there was hope! I'm going to stop now because this is blending with my earlier posts now.Saturday,

Feb.7/09I guess it has been a few days since I really gave an update. That's because there hasn't been very much to tell. Every day is hard. Progress is excrutiatingly slow. Scott still has the breathing tube in so he can't talk. He has hardly slept in 3 days and is utterly exhausted. He has been weaned off of some of the medications helping his heart - that is good. He needs less help breathing - that is good too. Today they took him off of the dialysis machine to see how his kidneys do but they will probably put it back on tomorrow. His body has been through so much. The doctors are positive. They say that there are steps in the right direction happening. They are just so hard to see. I did leave the hospital tonight on a good note. Scott was sleeping more peacefully than he had since he came in. What a relief to see. It's funny how you become grateful for such basic things like sleep, being able to pee, to eat and to breathe! I keep hearing that one day I'll look back on this time and it will be a little foggy. I can hardly wait for that day!!

Monday, Feb.9/09I'm feeling positive today. A few small positive changes for Scott. He was definately better than he has been for the last 2-3 days. I have hope that tomorrow might be the day they finally remove the breathing tube. But I've had that hope dashed more than a few times already. We'll see. Hopefully when that happens Scott will start to regain some strength and move forward steadily.It seems like every day there is a new concern or worry and the resulting tests and medications make it feel like going backwards. I just pray that tomorrow there won't be any reasons NOT to take out the tube. I have been so lucky to have such support here. It's really hard to be away from home, family and friends. I feel like I have this new, difficult life in the hospital. I have been lucky enough to have my aunt and uncle here supporting me and especially my sisters - Andrea last week and Carla this week. I had 2 days without a sister here and that was enough! Well, until Scott gets much better. Thanks girls!!!!I have hope for tomorrow and that gets me through today.

Tuesday, Feb.10/09They took out the breathing tube today. It lasted about 4 hours. Scott was exhausted breathing on his own so they put it back in:( Plan B is to put in a tracheostomy(sp?) and then Scott can have his mouth free but gradually improve his breathing strenghth over about a week. The plan is to do it tomorrow but for now he still has a breathing tube. The good news is that Scott's heart function is improving - especially with the breathing tube out. Unfortunately Scott is just so weak that it is going to take a LONG time for him to regain his former strength. It is going to be an effort for every step forward. Just having the strength to breath, then to swallow, then to sit up etc. etc. It will be a long haul.

Friday, Feb.13/09I'm updating today from a room at the Fantasyland hotel in Edmonton. Yesterday my dad and brother brought the kids up from Calgary to see Scott and I and to have some fun during Teacher's Convention. I was worried about how the kids would do seeing Scott but they did surprisingly well. Yesterday was the first day Scott could actually talk. They put the trach in on Wednesday and plugged it for the first time yesterday. He can only talk when it is plugged and he is breathing on his own. They are starting slowly but hopefully he will be breathing mostly on his own in about a week.He unfortunately developed a blood clot which has caused his left arm and hand to swell and will take months to get better. They did some tests to find the clot and it has something to do with his surgery. He is starting on blood thinners again and will be on them for at least a few months.I haven't been to see him yet today but I am bringing the kids again this afternoon before they go home tonight. It has done a lot to improve my spirits to see and hug a talk with Ben, Sam, Olivia and Thomas....still Friday...Well, it's been a very full day. I was able to be with the kids again today. They saw Scott twice and they really dealt with all of the stuff on and around Scott well. They noticed some of the bruises he had but were happy to talk with him a little. We went back to West Edmonton Mall this afternoon and spoiled the kids a little. It really was soooo good to see them - for Scott too. The hardest part was to say goodbye to them late this afternoon. I had to tell them that the doctor told me that Scott will probably be in the hospital for another 4-6 weeks at least. That was hard to say and hard for them to take. We'll see what the future holds. Ben asked if they could come again in 2 weeks and go to Galaxyland this time. I said we'll see. I guess we'll see.Saturday, Feb.14/09Wow. It's Valentine's Day. Today wasn't the ideal, romantic version some think it should be but it was still a good day. Scott has the ventillator turned off periodically during the day to strengthen his lungs and allow him to talk. Every time they do it it's like a strenuous workout for Scott. He's exhausted each time but his breathing is improving bit by bit. He had help sitting up for a few minutes today too. That is another step forward. He has been off the dialysis machine for 2 days and his kidneys are functioning with some medication help. Hopefully that will last! Again, baby steps! Thanks again for all of your prayers and help!Monday, Feb.16/09The last couple of days have been really hard but very encouraging. Scott is being "plugged" on his trach 3 times/day and has been sitting up with help a few times/day. Each of these activities takes a tremendous amount of energy and effort from Scott. He is completely exhausted each time. The encouraging part is that it is working. Scott is building up his strength again. It will still take a long time but the progress is evident. I feel like Scott's personal trainer (along with the nurses) because he needs to be pushed harder than he thinks he can go. He is often frustrated and angry. But it is so much better than him just laying there getting weaker.

Tuesday, Feb.17/09Today was not so good. Scott didn't wake up all day. I'm not sure if it was the drugs, all of the exertion or what but he slept all night and all day and hadn't woken up when i left at 7:00pm. The surgeon came in today too and told me he's going to take Scott into the OR tomorrow afternoon because his surgical incision is leaking a lot. The plan is to figure out why and fix it. I get really nervous about the OR now - even though it's not a big deal. I hope it goes easily and quickly tomorrow and that there's no bleeding. Why can't we just keep moving forward?! I really hope we can stop having these setbacks and just move forward steadily.

Wednesday, Feb.18/09Today Scott finally woke up. He was pretty mellow this morning. They didn't let him do anything because he was going into surgery in the afternoon. The surgery went well and they fixed his sutures because they were pulling apart due to fluid retention and swelling. It only took about an hour. Tonight Scott is going back on the dialysis machine to help his kidneys out. The doctors think his kidneys just need time to recover but there are signs that they will. Hopefully Scott will have a good rest tonight and be ready for physio tomorrow.

Thursday Feb.19/09Today has been three weeks since the transplant. I have seen many other families come and go from the hospital having bypass surgeries, heart and lung transplants and other heart surgeries. Today I'm feeling sorry for myself that Scott and I are still here and will still be here for weeks. Scott had a heart biopsy today which is mandatory every week after a transplant. Last week's showed no sign of rejection. Hopefully today's result will be the same. Scott really is very tired again. Just before I left they gave him 3 units of blood. Maybe that will perk him up. Sometimes it's really hard to stay positive. I have days when I feel so strong like I can keep going as long as necessary. But I also have days when everything feels overwhelming and I feel like bursting into tears and giving up. I try to hang on to the blessing my dad gave Scott when he was barely hanging on - Scott will come home and be with his family again!! It sure seems like a long shot today though. It helps to think of all of the prayers offered on our behalf by so many wonderful people- they can't be ignored! Somehow we'll get through this. Somehow.

Friday, Feb.20Yesterday was emotionally tough for me. Thankfully today was much better. Scott didn't jump out of bed and run around but there were small improvements. He was making jokes and asking for soda and toast. Actually I had to lipread all of this and it took forever but he wasn't only sleeping today - that's better than the last few days. I certainly have a lot to be thankful for though. I am so well taken care of by my aunt and uncle here in Edmonton. I haven't had to do laundry, clean, drive or do any sort of work other than support Scott. I have a wonderful lunch made for me every day and a good dinner after I leave the hospital. There are many family members I've met here who aren't so lucky. Although i miss my kids and home I'm not worried about them. They are well taken care of by Scott's mom, my mom and many other family members and friends. It could be so much worse! I really am blessed.

Saturday, Feb.21/09Thankfully today was another good day. No tests, no setbacks just working on getting better. Scott could talk a lot and did talk a lot. He was joking a lot too. We both laughed together. Laughter really is a good medicine. Scott's voice is still pretty weak and he's pretty drugged so it takes him awhile to say what he wants. He laughed at his own voice and said he sounds like Mr.Deeds. It was true too! He breathed well on his own for awhile and sat up twice. Better than the last few days! Now we need his kidneys to do their job and it will really feel like progress!

Sunday, Feb.22/09Wow, is that the date already??!! Today was much like yesterday. Still working, getting a little stronger. Scott stood on his own two feet for a very short bit, with help today. Scott is starting to seem more like himself again. I recently asked him if he could feel the new heart in him. He nodded and I asked him what it felt like. He mouthed back "drums". I forgot to note yesterday that the last biopsy showed no rejection again. There are still a lot of biopsies ahead but we're two for two!

Monday, Feb.23/09Unfortunately today there was another setback. Scott had a really bad morning and his blood pressure went dangerously low and his heart function deteriorated. I guess I'm glad he's in the ICU when these things happen because there is always at least one doctor there and they have everything needed to help things quickly. I don't think they're sure why he had these problems but they are guessing he had some blood buildup around his heart and lungs that was putting pressure there and decreasing function. They put another chest tube in to drain out the blood and fluid. And it had drained a lot before I left tonight. He did improve in how he looked after that too. Overall it was a pretty crappy day but at least it ended better than it started for a change. There was no physio, not sitting up - just managing the new problem. Because of the blood clot Scott developed there's the catch 22 of being on blood thinner for the clot but trying to keep him from bleeding too much. AHHHH!!!! It's been back and forth - on and off the blood thinners. It may be like this for awhile.

Tuesday, Feb.24/09I'll put the good news first. Scott was off the ventillator the entire 10 hours I was at the hospital and was still off when I left! He'll probably be put back on for the night but that is huge! They did a CT scan of Scott's chest to get a better idea of the fluid built up there. They found a lot of fluid around his heart becasue there is a big space there where his old, enlarged heart used to be. They think there might be a lot of blood there. They're pretty sure he was bleeding internally and that's why he was doing so poorly yesterday morning. So no more blood thinners - at least for awhile. Tomorrow Dr.Rebeyka, the surgeon, is going into Scott's chest for the 5th time to drain the excess blood/fluid. I asked Scott how he felt about this new development and he said "confident". I'm really hopefull that with this problem solved the other blood pressure issues and lung pressure issues can be fixed. That's my new hope. I don't like the idea of surgery again but Scott has such high quality people working on and around him that if they can't help him I don't think that anyone can!

Wednesday, Feb.25/09Scott did go back to the OR today. It took longer than i expected but it also went better than I expected. The surgeons cleaned up the blood around his heart and they were also able to take out the blood clot near his heart. The good news is that he won't need to have blood thinners with that gone. That should help the continuing problem of bleeding. They said his heart looks really good. I asked what the biggest concern is and they said infection. They will continue to be extremely vigilant looking for the slightest signs of infection and treating any aggressively. Scott is still in the right place. It isn't comfortable, quiet or easy but it is temporary. I only know of one person left in the unit who was here before Scott. I certainly don't want to set any records!!! Scott asks/begs/pleads and offers bribes for pop. He hasn't had a sip to drink or a bite to eat since the transplant 4 weeks ago. I think that might be one of the hardest things for him at this point. There is also the problem of never seeing the light of day and the constant hum and beeps of the machines and people moving about and poking and prodding at all hours of the day and night. But there are the advantages of having the best possible care immediately when needed.I want to let everyone know that I really appreciate the messages and comments of encouragement and support. It helps me to feel connected to home and normalcy. I don't always reply because sometimes I'm just worn out but I always read them! Don't stop because I don't always reply. Thanks

Thursday, Feb.26/09Today Scott was doing pretty well. He is recovering all over again from surgery but much faster this time. His incision is really sore but he is otherwise pretty good. He has been breathing on his own all day today - 7am-10pm and is only on the ventillator during the night. Tonight they will leave the dialysis off and see how his kidneys do on their own. I hope they recover!

Friday, Feb.27/09Another day gone by. Scott is getting stronger again. His physiotherapist said he's stronger today and doing more of the exercises on his own without help. But along with getting stronger comes noticing the discomforts of the hospital more. Scott was actually quite cranky and miserable. Everything bothered him today. There is a common problem in an ICU setting of going a little crazy after being there awhile. It comes and goes. Today it came full blast. Scott was hallucinating and had all sorts of strong emotions and wasn't afraid to let anyone in hearing distance know. They gave him oxycodone which makes all of that worse. I asked them to please not give it to him anymore - so did Scott. Hopefully he'll get it out of his system today. With his kidneys not cleaning stuff out of his blood very well it's hard for his body to get things out. tonight they are putting the dialysis back on. i hope that helps.I was lucky enough to have 2 good days! Yesterday a wonderful friend came up from Calgary and we went to the temple and out for dinner together. It was such a nice break! Today Dwayne Lonsdale stopped by to visit. Thanks Dwayne! He dropped off a bag of thoughful gifts and cards for me from the amazing ladies in my ward at home! That really did help make a difficult day better. Thanks ladies!!! I hope Scott gets a good night sleep. I think that will make tomorrow a better day.


Saturday, Feb.28/09Today was better than yesterday. Scott was able to do his physio pretty well. He wasn't crazy like yesterday either. He was, however, completely exhausted. His sleep cycle is so out of whack! He hasn't slept for more than an hour at a time in 2 days and 2 nights. I keep praying that tonight he will sleep. It is much harder to recover when you are sleep deprived! Scott is starting to set goals for himself. He asked me to write down some of the things he wants to do when he gets home. I have no idea how long that will be yet. He stilll has a long way to go. Tonight they are going to try to keep him off the ventillator all night! If he goes 2 or 3 days off with no problems they will do a swallowing test on him. If he does okay with that he will start to get drinks and eventually food. I know it won't be steak or onion rings for awhile but maybe it will be the pop he soooooo desires:) A few weeks ago Scott offered the doctor $500 for a gingerale! It didn't work. He has to be extremely patient! This is a very difficult journey but I know it will be worth it!