Christmas Shoes

Have you ever seen the movie "The Christmas Shoes"? I have. I'll never forget it.

Last year, during the entire holiday season - from a month before Christmas to a month after New Years Scott was waiting in the hospital on the heart transplant list. Every day I spent some time at the hospital, sometimes going back and forth more than once. The hardest times were when I had to leave Scott at the hosptial at about 9pm so that the babysitter could get home at a reasonable hour on a school night. I would come home to a quiet house with all the kids in bed. It was a very lonely time. I would often watch a little TV to keep my mind from going places I didn't want it to go.

One of these evenings I happened to turn the channel to a made for TV Christmas movie. I hadn't seen it before and it had already started. At first I didn't know the background of the characters but I quickly became interested. There was a young teacher/mother who was sick. I soon realised she had heart failure and was waiting for a heart transplant. I became fixated on this show as I was desperate to see a happy ending beacuse I was hoping to have my own any day.

I watched as this young woman got "the call" and her family had the excited, anxious experience of getting ready for a new heart at the hospital. Every night I would carefully put the phone beside my bed hoping that it would ring in with the news that there was a heart for Scott. In this movie, however, the call turned out to be a "dry run". That meant that something happened with the donor heart making the doctors choose not to use it. I felt so disappointed! I had been worrying about a dry run myself.

Now the wait continued for this woman and her family. She got sicker and sicker. I sat on my couch feeling devastated as this poor woman's husband and son brought her home to care for her during her last days. I sobbed and sobbed but could not turn it off. On Christmas Eve the young woman quietly passed away. Watching this was a small preview to my worst fears. I cried for a long time.

Thankfully my story had a different ending. "The call" came. It wasn't a dry run and it was, after a long difficult recovery, successful. My children and I still have our dad and husband. We didn't have to bring him home to live out his last days with us. After the feelings a fictional experience of losing someone produced I'm very grateful that I haven't experienced them yet. Hopefully it will be at least 30 or 40 years before that ever happens!

Please talk to your family! Tell them how much you love and appreciate them! We never know when our time is up. Take time to enjoy what you have now. If you have a chance to watch "The Christmas Shoes" make sure you have a box of Kleenex handy. You'll need it!

Milestones

We have hit a few milestones recently. Scott has gone back to work part-time. That is a huge blessing for us. I like having Scott home but he needs something to do. He needs to contribute, be busy, and use his skills. I'm sure it won't be too long before he's back to full-time hours.

Scott is also going to his last supervised physiotherapy session next week. He has joined a gym and is working out regularly on his own. His muscles are getting stronger and his endurance is great!

Last week he had another biopsy that showed zero rejection. YAY!! He hasn't had a "zero" for many months now. He feels great. He now has the privileges of taking out the garbage, shoveling the snow, putting up the Christmas lights and doing small home repairs. It's not like he never did those things before but now it's quite easy for him so I don't feel guilty asking him to do them.

A few weeks after our youngest child was born 3 and half years ago our new neighbours were not impressed to see me mowing the lawn so soon after giving birth. It was a difficult task for Scott to do and I didn't mind so I did it. They did give poor Scott a hard time about it until they heard of his heart condition. Next spring will be a great change. I have a few yard projects in mind to keep Scott busy!

I've also been thinking back to last Christmas season. I spent many days and evenings at the hospital visiting Scott. Many family and friends took care of the kids during that time. We were completely spoiled with gifts - some anonymous - which added many smiles and laughter to that dark and difficult time. Someone wrapped all of my presents for me, friends drove my kids everywhere almost daily, and many other acts of love and kindness were received by us. I received many cards and emails of encouragement that supported me as well. Again I am feeling so overwhelmed with gratitude.

I am so happy and thankful right now! I know that it is through all of the love and prayers by so many that we have made it through this last year. Thank-you!

Happy Birthday Scott!

Today is Scott's birthday. We have so much to celebrate! Some people groan at the thought of birthdays and getting older but I think each year that we have on earth with our families is something to cheer about and be thankful for! I've never been more grateful for a birthday than this one for Scott. I really wasn't sure he would make it to 38 early this year.

Last year on Scott's birthday we had to be at the hospital early in the morning for Scott to have a hernia repair - minor surgery. It was a LONG day but he came home that evening. It was a pretty crappy birthday! For the next 3 days after the surgery Scott felt absolutely awful! He hardly moved. Finally, he was feeling so bad that he went to the emergency. We found out his kidneys were shutting down due to low cardiac output and he was put on very serious IV heart medication. That was day one of 6 months in the hospital! The hernia operation was "the apple that tipped the cart" for Scott's heart. So every birthday without a surgery is a good one now!

I think I'll always be grateful and happy for each birthday from now on. I only have to consider the alternative - NOT living another year.

HAPPY BIRTHDAY SCOTT! I'm so happy you're still here!

Good Biopsy and H1N1 Panic

Another biopsy is done. It was a 1R. That is good but not fantastic. A 1R means the rejection is better but not completely gone. So the steroids are lowered slowly. Poor Scott and those steroids. It's much better than losing heart function though.

I feel like we're in the middle of the H1N1 panic. It's bad enough when everyone is healthy but when I live with an immune- suppressed person I'm much more edgy. Most of my life I've been pretty easy-going about my family's health, vaccines, doctor's appointments etc. Now, after what I've seen this last year of ICUs, breathing tubes, septic infections, surgeries, and near-death experiences I will do nearly ANYTHING to avoid them - especially a little poke in the arm for my family.

Yesterday we lined up for 3 hours for the H1N1 flu shot. It wasn't too bad. My arm hurts a lot though. Can you believe I'm such a wimp!? I've heard of many people with ILI(influenze-like illness) and so far we've been lucky. Hopefully the vaccines will kick in before we're exposed. I don't usually follow all of the media hype but this time I find myself very interested in every statistic and every opinion.

Have I turned into "that person"? The germophobic, self-isolating, overprotective mom/wife? Maybe a little. I have to give myself a little credit though. We're all still alive - and pretty happy. I might be a little neurotic for a few weeks but it's pretty much a result of a stressful, difficult year. At least I still let my kids go to school...most days:)

Letters to the Donor Family

I've been wanting to blog about a delicate subject: The person and their family who donated so that Scott could have his new heart. I've been reading about other transplant recipient's experiences and I want to share a little about our experience. I want to respect the donor family's privacy by not putting details out publicly but I also want to share what a wonderful experience it has been to communicate.

We have received 3 letters from the donor's mother. I have written 2 letters, Scott has written a letter and the kids have sent notes and pictures. The H.O.P.E. program facilites the exchanges so we don't send or receive things directly.

It is very humbling to hear from this mother who still feels such pain and loss. It is sometimes difficult to know that our extremely positive event came from someone's VERY negative event.

We know that the donor was a young woman. Her mother has shared with us some of her good qualities. We know she loved children, she had a good relationship with her family and was very loved. She was strong and healthy before a sudden, tragic event.

I do know that writing to this family has been positive on both sides. I'm very sorry that this family has experienced so much pain and suffering. We feel connected to someone we don't even know. It has been reconfirmed to us that there are good, kind people out there who give without receiving anything in return - just because they know it will help someone. The donor's mother has told us that the knowledge of her daughter's gift helping our family has brought her "joyful tears" and smiles. She said that our letters have meant a lot to their family and knowing the difference their gift has made does help them.

I'm grateful for the opportunity to communicate with this family. I'm grateful for the letters we've shared. Sometimes I would like to look them in the eye, give them a hug and let them see with their own eyes our family and the difference their gift has made. The laws here don't allow for that so I can be satisfied with the letters.

I hope anyone reading this post will think about organ donation and choose to talk to their family members about their wishes. Organ donation saves lives and families. It has saved ours.

Ups and Downs

The last 3 days have been quite eventful. I know I haven't updated in a long time. That is because things have been going quite well. We met with the nephrologist this week and she said Scott is doing great and she doesn't need to see him at all anymore!! Then Scott had a biopsy and clinic appointment with the transplant team. We discussed Scott going back to work as early as next week part-time! We also discussed Scott finally getting off the prednisone(a steroid) after 8 months. He started with at least 50mg/day and was down to 2.5mg/day. If the biopsy results were good they told us he could go down to ZERO!!!! It was a good appointment.

The next day we took a trip to Edmonton. We haven't been there since Scott was transfered back to Calgary over 6 months ago. At that time Scott was barely taking a few steps with a lot of help. He was bloated from his kidney failure. He was still suffering from sleep deprivation and hallucinations. His legs looked like a Halocaust surviver's. His hair had fallen out in places and he stilll had a lot of tubes. In other words he looked pretty bad.

We had the opportunity to see the surgeon, the Berlin Heart doctor, the transplant coordinator, a transplant cardiologist and some of the CvICU staff. They all said they wouldn't have recognized Scott on the street. Thank goodness!! He is a normal, walking, pink, non-bloated regular-hair guy now. It was a great experience to see their smiles and let them know that we appreciate their hard work in keeping Scott alive - because it was hard work!!! We also had a tour of the new units in the new Mazankowski Heart Institute. The new CvICU was SOOO much nicer than the old one. Individual rooms, windows, healing gardens... Oh well, I guess I'm glad we didn't wait an extra 6 months to be able to benefit from the new building.

After that good experience we were able to visit with some family, enjoy time together and attend the temple for the first time together in over a year! We were having a great trip. Then came the bad news. We received the phone call. Biopsy results. Rejection! Not the worst - a 2R. A 3R would be worse. But the dream of ending the prednisone is dashed! Now Scott must take 100mg of prednisone for the next few days then he gets to start the weaning process all over again. We were at 2.5mg!!!! Now the side affects again. Swollen face, pimples, mood swings, bone loss, high blood sugar, etc. etc... I think the weaning process is quicker this time - at least that's what I hope. Now I'm not sure about going back to work. I'm not sure what all of this means. When you get biopsy results late Friday afternoon we just start the new drug regimen and wait until next week for many answers. I do know another biopsy will be scheduled in 3 weeks. Hopefully the rejection is thwarted by the nasty prednisone and life can get back to normal again. But for now the roller coaster continues...

Home again:)

Scott is home again after 6 days in hospital. He is not tube-free anymore:( He now has a drainage tube attached to his leg to drain the hernia site so it can't accumulate fluid and get infected again. Hopefully he'll get it taken out in a few weeks. He also has a picc line which is always attached to an IV bag of antibiotics and a pump. It gives him a dose every 4 hours for a month! We REALLY don't want this infection to survive this time!
Gratefully Scott does still feel good. The docs continue to make changes to his meds and another biopsy is scheduled for next week. This time he will get it done the easier way! YAHOO! We won't have to spend 8 hours in hospital for each biopsy anymore. THAT is good news!
Yesterday was the 1st anniversary of my grandpa's death. We visited the cemetery. It struck me how close it came to Scott being there. I felt overwhelming gratitude as I stood there thinking how hard it would be to only visit Scott in a cemetery. I held him close.
Today is our 14th wedding anniversary! I've really been introspective and reflective these 2 days thinking back on this last year. When I feel discouraged because Scott's recovery isn't progressing as quickly as I'd like I only need to read back on my entries from early in the year. The wait for a heart ended, the ICU experience ended, and the hospital stay ended. We are still going in the right direction. I'm thankful to have made it this far! Each day is a gift. I appreciate each one. Fourteen years is really an accomplishment!!!

Not Again!

Another bump in the road this week! The night before we came home from Utah Scott woke up in the night with chills and a fever. Fevers are a big deal when you are immunosuppressed. After talking with the transplant team we decided Scott should fly home. We bought him a ticket and away he went. I still had the 14 hour drive with 4 kids to do so Scott's parents helped out and did it with me(in 2 cars).
When Scott got home he felt pretty awful so he had my dad take him to the emergency. They did a whole bunch of tests but didn't find any source of infection - maybe just a virus. So Scott continued with the fever, chills, lethargy and no appetite for another day. Then I came home. The next morning, Wednesday, he had a clinic appointment with the tranplant team. That same morning he noticed swelling and redness around the site of his hernia repair that was done in May. When his doctor saw it he told Scott to go to emerg again. So away we went. We met with the general surgeons again and they waited for an ultrasound and bloodwork and every hour there was a new plan. Surgery, no surgery, infected fluid, not infected fluid...

Finally they drained the fluid with a needle, put Scott on IV antibiotics and sent us home. We did need to come back at midnight for another dose and back again in the morning for Infectious Disease doctors to decide the type and duration of antibiotic treatment. That was a long day!

But Scott continued to have a low-grade fever. The next night he had a high fever again. We also got a call from an ER doctor that his blood cultures from 2 days before had come back positive for a blood infection - staph again. Back to the ER again. Gratefully Scott was feeling better by the morning and was admitted to the hospital and feeling pretty good. The infected area was filling with fluid again so Scott had a CT scan and radiology drained it again and left a drain in this time.

Now we wait and see how Scott heals. Then he can come home. Hopefully this is a short hospital stay. Considering Scott's last infection that put him into septic shock this really hasn't been too bad!

Rainy Day

Sometimes rainy days are nice. It gives me the chance to stay inside and blog, right! We've been in Utah for 12 days now and it has been mostly HOT -usual August weather here. It really has been a vacation. We've had a lot of fun with family, met new family members, met old friends and new friends. Thankfully we've had 2 weeks to get everything in. I am feeling ready to go home now though. Back to reality. School starts in 2 weeks and I really should make the kids get up before 9am. Otherwise it will be a rude awakening on the first day!
I guess I should update on Scott. It has been over 6 months since his transplant now. We are used to the medications and procedures. The day after we arrive home Scott has 3 medical appointments to catch up after 2 weeks off. The fact that we left the country is pretty amazing! Scott even went in a pool a few times. That is the advantage of being tube free. He still looks forward to being more limber and having fewer aches and pains. I think that will just take time. We're not sure when he will be ready to go back to work but it is now on the radar. He looks forward to going back. That is the next big step forward.

TUBE FREE - FINALLY!!

It is true! Scott is completely tube free! His peritoneal dialysis catheter was removed today. He has no medical paraphernalia attached, implanted, tunneled, inserted or hooked up to him. That is a first in almost 9 months. Now he can have a shower for the first time in months. He doesn’t have to use any saran wrap in the shower either(to keep paraphernalia dry).

The appointment with the nephrologist went great! She said that Scott’s kidneys have been working 35-45% over the last month and they may continue to improve. We may not need her services any more. Can you believe that!?!? I am still amazed!

Because of Scott’s kidney improvement, his anti-rejection medication levels have not been very consistent. They keep changing his doses and therefore need to biopsy more often.

The biopsy for Scott is a huge pain!! Most heart transplant patients have a biopsy done through a vein in the neck. They use minimal local anesthetic and it takes about half an hour to go in and get microscopic pieces of heart tissue. It is done in the echocardiogram lab at the hospital. Scott however has unusual anatomy and veins. Due to that and other issues Scott has to have his biopsies done through the groin. Because this is a more complicated procedure he needs more anesthetic and it needs to be done in an operating room settting called the catheterization lab. He also has to lay flat for at least 2 hours after the procedure. Then he can walk around for an hour. Then they take out his IV, give us a speech about how to care for the site, and give us the spiel about the possibility of fatal bleeding. Nice. The entire process always takes about 6 hours. Not fun!

Scott is scheduled for another biopsy on Monday. He has had them every 3-5 weeks for months. The last 4 have been 1R – very mild rejection. I keep hoping for some zeros. Maybe then they can increase the time between biopsies. I guess I should be grateful that the worst thing now is biopsies. I am. But I can still hope for fewer of them, right!?

Gratitude

Life is good! Maybe even great. The promised changes are happening. Sometimes it still stops me in my tracks – Scott has a new heart!!! This heart is healthy. I sometimes think back – especially to the year before his transplant. I always knew Scott had a heart problem but it never seemed like a big deal to me. He was just Scott. His slowing down physically was quite gradual to me. We just got used to it. Scott complained very little. He just kept on trucking. We got used to the fact that he just moved slower than most and needed frequent rests. Now I know that Scott was experiencing heart failure – his heart wasn’t providing adequately for his body. It now makes sense to me why he had such a terrible time in Las Vegas last summer. Did you ever notice as you walk around the hotels that the only place there is to sit is at gambling stations?! So when we walked around as a family Scott would become VERY tired and want to sit down. We don’t gamble and we had our kids with us so Scott wasn’t allowed to sit in any of the thousands of available chairs while walking through the enormous casinos!! He never wants to go to Vegas again!

We were able to go on a vacation already this summer. We attended the Hornberger Family Reunion in Summerland, B.C. We had a wonderful time! We had been preparing to attend while Scott was doing dialysis and we were trying to figure out how he could do dialysis there. I am so grateful that his kidneys have recovered enough that we didn’t need to transport dialysis equipment on our trip or spend time doing dialysis there! The human body really is amazing!

Scott only has one tube left in his body. He still has the peritoneal dialysis line in his abdomen. He couldn’t go in the water on our trip which was a bummer and he still can’t shower. On Monday we meet with the nephrologist again. Scott’s dream is that she will recommend removing that line. Last time we met with her she said that was a possibility. Then Scott will be totally TUBE FREE!!!! No picc line, no dialysis lines, no oxygen, no dopamine, no IVs, no chest tubes…NOTHING. Nothing to clean, maintain or possibly cause infections! I can hardly wait.

It has almost been 6 months since the transplant. One year ago I had absolutely no idea what was in store for our family. I have learned so much. I have never felt so afraid and overwhelmed as I have this year BUT I also have never felt so loved and supported. It still isn’t always easy. Scott will always have many, many medications to take and bloodwork to be drawn and biopsies and clinic appointments. He will have to be very aware of his own body and health. But it is such a small price to pay for this new opportunity.

Just one more note as I am just going on and on. I often think of the family of the person from whom Scott’s new heart came. They must still feel such pain and loss. Six months is not much time to ease the pain of loss. Yet in a time of deep anguish they chose to give us such a gift! Again I am overwhelmed with gratitude. The blessings in my life are so tremendous and numerous that I can’t begin to number them. Just know that my gratitude runs deep.

BIG NEWS!

Big news! We met with the nephrologist yesterday and she was very pleased with how Scott is doing from a kidney perspective. Scott is now in the “recovery phase” with regards to kidney function. I wasn’t sure this day would ever come! The doctor said that he doesn’t need dialysis right now and she’d see him in a month. His kidneys are functioning at 25-30% right now and they’re hopefully still improving. It’s only when kidneys work less than 10-15% that dialysis is needed. She did say Scott’s kidneys will never be 100% but that’s okay. The reason people can donate a kidney is that kidneys are capable of doing a lot more work than a body needs.

What an answer to prayer this is! I feel very overwhelmed knowing that so many have prayed and fasted specifically for this blessing. This is also the fulfillment of priesthood blessings. This feels almost as big as the news that there was a heart available. I am very grateful and humbled to be so blessed!

Cautiously Optimistic

Scott came home overnight on the weekend on a pass. When he is discharged he’ll be set up to get his antibiotics through the picc line with a timed pump. He won’t need a nurse to administer it every 4 hours. It really helped to get out for awhile. Hopefully he’ll be home again in a day or two.
Today Scott went into the OR again. They repositioned his Peritoneal Dialysis catheter. They didn’t have to completely replace it but they still had to go in surgically. He’ll be pretty sore tomorrow again.
Good news though. I’m trying to be cautiously optimistic but it’s hard to keep my hopes at bay. So many have been praying for months that Scott’s kidneys will recover. He’s been on dialysis for over 4 months now. Because he has had no way to do dialysis for the last 10 days he hasn’t had it. BUT…. his kidneys are starting to do some work! There certainly isn’t a full recovery but the signs are good. His frequent blood work is looking good. He is retaining a lot of fluid but his toxin levels are acceptable and not rising so far. Today he started diuretics to get rid of some fluid and they are working too. He is doing so much better than the last time he went 10 days without dialysis in March. The doctors certainly won’t say whether or not he’ll continue to need dialysis yet but they are happy with the current trend. SO AM I!!!!! I just pray that it continues.
Thank-you for all of your kind deeds, words, thoughts and prayers! It really makes a difference to us.

Did I say it was getting easier?? oops

Still in the hospital. There are a few reasons but Scott feels fine. The antibiotics have been working and he has no symptoms of an infection now. It was confirmed that he had a staph infection on his dialysis line and it progressed to a full-blown blood infection, or sepsis. His cardiologist told him(when he was past the worst) that it was the kind of infection that “could do a person in”. So we’re lucky and grateful we caught it in time. Scott was close to being admitted to the ICU – not the CICU – worse. Thankfully it didn’t get quite that bad.
Scott has been receiving IV antibiotics and will be for the next 3 weeks. He only stayed in the CICU for one day then he was moved to unit 81 – the same room as before. They plan on putting a picc line in his arm again so he can go home on the meds. BUT the big issue is dialysis. Now he can’t have hemodialysis because they took out the catheter for access. Because he already has a PD catheter line that was put in surgically over a month ago they were just going to start PD dialysis Tuesday night. When they tried to use the PD line it didn’t work properly. They took an xray and it isn’t in the right spot. Now surgery gets involved again to make it work. But that means wait and wait and wait. So Scott feels fine and wants to come home but instead he sits in a dreary hospital room on a beautiful, sunny day waiting for a surgery that could take days to happen again. This really stinks! I try to tell myself to be grateful because it could be so much worse but it still isn’t easy.

Back in Hospital

I know I said on my last post that I wouldn't update for awhile. But when things get hard it helps me to do the updates. Yesterday(Sunday) Scott took his temperature like he does every morning. It was definately a fever at 39.2 degrees Celcius. After calling the transplant team they said to wait and see if it got better by the evening. Unfortunatley it didn't and the chills started. So they told us to go into Emergency. It was a short wait in the waiting area when the doctor calls to say you are coming. After getting a bed in the ER they did a bunch of blood work and hooked Scott up to everything (blood pressure cuff, heart monitor, IV etc.) His fever kept rising. At one point it was 41.7!!!! They told us they were going to admit him for an infection. He had a rough night with blood pressure dropping and a high heart rate, body-shaking chills and a consult with the ICU doctors. In the morning they took out the dialysis line from his neck. It looks like that was probably the source of the infection. We won't know for sure until the results come back from the tests on it.
After a night and a morning in an ER bed Scott was finally admitted to the CICU. Back to that place again. His fever is getting better but he's just plain wore out from fighting this big infection. Hopefully it's a good night tonight and the antibiotics do their job. I'm praying for a short hospital stay!

Good is fine with me

I’ve been wondering whether or not to continue my public updates on our day to day accomplishments and struggles. I don’t mind sharing but Scott is more private than I am and doesn’t always want all of his personal health details ‘out there’ for anyone to see. It started as a way for me to answer the questions everyone was asking in a format that allowed me to spend less time on the phone and explaining the same things over and over. It turned into much more for me. It became a way to feel connected with others, share my story(Scott’s story really) , document an important series of events, and feel support from many people near and far. If it was only my story I would continue to blab away but it isn’t just me. I think Scott just wants to move on, not dwell on the past and be that ‘normal’ person he has always desired to be. He is getting tired of talking about health stuff. So this will be my last health update for a time.
So “How is Scott doing?” He would say ‘good’. It is true. As I often reflect on the past year and especially the past 4 months since his heart transplant it has been such an amazing journey! The roller coaster has leveled off dramatically and we’re coasting along nicely. There are still bumps and wobbles but the extreme ups and downs seem to be behind us. I know I sound like a broken record but I really would like those kidneys to shape up! It’s also a different life living immunosuppressed. When an immune system is deliberately held back from fighting off everyday germs, those everyday germs become a big issue! We are handwashing maniacs! Don’t be offended if you shake Scott’s hand and you soon see him pull out the hand sanitizer! It’s not just you.
Scott had a heart biopsy 2 weeks ago. It was the first that showed any sign of rejection at all. He was at a level 1 out of 4(4 being the worst). The transplant team is not worried at all about a 1. They have lowered Scott’s immunosuppressant medication so he can fight an infection he’s been slowly developing. It is such a balancing act! He has another biopsy this Friday. I hope it is still good. Scott keeps getting stronger – again slowly but surely. There are many pounds of muscle to rebuild. But it is coming.
So things are good. Not fantastic, not terrible, but good. And good is fine with me.

Getting back to normal

I guess I haven't added to this for awhile. The truth is, no news is good news. Life is getting back to normal. Routines are being established and re-established. I'm much more relaxed without going back and forth from the hospital every day. I haven't had a conversation with a doctor in 10 days and I like it. There are still health issues that are ongoing. Scott's medications are always interesting. Blood work is being done weekly and changes to meds are made accordingly. Scott is still building up strength. He has an enormous appetite and good energy. We're just waiting for his muscles to catch up to his heart. It would also be really nice if his kidneys started to pull their weight but so far they're pretty lazy. We are scheduled for training on peritoneal dialysis near the end of June. The incision from the hernia surgery is still a big question mark complicating the new dialysis plan. It's nice to not have any big worries and concerns but it still takes patience to wait for the little things that just take time. I can be patient! At least we have a time together to work this all out. That's all I really wanted. Whenever I think things are taking too long I just have to remember the first few days after Scott's transplant. All I wanted at that time was the chance to be with Scott longer. Every day we have together is a blessing.

Our ward came together today to celebrate Scott getting out of the hospital with an ice-cream party in our backyard tonight! It was so wonderful to have so many of the people that have supported us in so many ways gather together with us. It was a time filled with sticky faces, kids everywhere, visiting with friends, laughing and just enjoying being together. Thanks to those who also worked organising, setting up and scooping! We really are blessed to have such great friends and family! I only took pictures at the beginning because my camera batteries died early on. I'm sorry I didn't get more pictures of all of the people that came to support us.

Today was a busy medical day. Scott had an echocardiogram this morning at 7:45am followed by bloodwork and a heart catheterization/biopsy. These were done to determine pressures in Scott's heart so some of his medications could be reassessed. We didn't leave the hospital until 3:30pm. The good news is Scott's pressures were normal!