ALEXANDER

Alexander was born with hypoplastic left heart syndrome. He had his first surgery at 13 days old. The surgery itself went well. We did however have to stay in hospital as he was having trouble eating. He would burn more calories having a bottle than he was gaining, so it was decided he would be sent home with an NG feeding tube. We were to use a bottle for 30min only and after we would tube feed whatever he had not finished. I was bound and determined to have that tube out....so when he was about 5 months old and it was his monthly tube change, I fed him without his tube and he finished his bottle in less than the allotted 30 minutes!!! So we never put it back in.

 

Alexander had his second surgery, the Glenn, at 5.5 months old. The surgery went well but the surgeon had to go back in a couple days later to drain a bunch of fluid that had built up behind his heart. We were sent home after only being in hospital for one week!!! He did amazing! Alexander’s third surgery was quite difficult. He was 2 years 7 months when he had it done. We were told he’d probably only be there a week as it was the easiest of the three needed. However after 5-7 days he started saying "owie" and pointing to his chest. We figured it was just from the surgery that it hurt. However that night his dad stayed with him at the hospital so I could get some rest at RMH, we also had his younger brother with us which made it more difficult as he was a very busy 15 month old. When his brother and I arrived in the morning it was chaos in Alexander’s room!! Doctors and nurses were coming and going, specialists were in and out and different ones called in. It turns out his “owie” chest was a staph infection in his sternum. His surgeon, Dr. Rebyka had to perform an emergency surgery at 8:30-9 pm that night! It was the most scary time. A few hours later he came out and explained Alexander’s infection. He said “I’ve never seen so much infection in such a little guy, I’m amazed he’s still here”. We didn’t get to see him for another hour or so.  After that it very slowly got better. They had to put a wound vac on his incision to keep sucking more infection out as it developed. He was put under anesthesia every second day so it could be changed.

 

In the mean time his dad and brother got sick so couldn’t visit Alexander. Shortly after all three of us were sick and had to leave him in the hospital with no visitors....it was gut wrenching. After about 3 days we were all able to go visit again. He was doing well and still getting his wound vac changed every second day. This continued for about another 4-6 days. He was then mostly out of the thick of things. Alexander’s one week stay turned into a one month stay. He was transferred back to Regina where we got home care set up before bringing him home. This was the worst out of all his surgeries; he almost never came home.

After being home for a few months he started to get very puffy where he couldn’t even open his eyes all the way because there was so much fluid, this was October-November. In January he was admitted to Saskatoon RUH for testing and it was determined he had developed Protein Losing Enteropothy (PLE). This is where the body does not absorb protein and it floats to the surface of the skin; this explains all his puffiness. The doctors were able to put him on a steroid called Entecort to help his body absorb protein. It worked great. However the major side effect was stunted growth. He stayed the same height for pretty much 2 years. After the 2 years we were able to wean him off the steroid and he started to grow again and was doing great!!! About 1.5 years after being PLE free...it came back! And it was worse than before. In April of 2015 he started the Entecort again. We waited for a month for it to start working but it didn’t. His doctors added another drug, and then another and by June he was going to the Peds Outpatient in Regina every 1-2 weeks for albumin infusions, to help his body absorb what it needed. His albumin levels should have been around 40 and his were actually 10-19. At the end of August 2015 I took him (and his brother) to an appointment by myself since my husband couldn’t get off work that day. It was one of those you never forget. He had his echo done, bloodwork and ECG as usual. However at the end of it his doctor; Dr. Pharis, came into the room...you could see he was very upset and somber. It was then he told me Alexander would need a heart transplant. Our sweet little 6 year old who had been through so much, would have to have another heart surgery. We went to Edmonton for a week of nonstop appointments the first week of October. He passed everything he needed to, to be listed.

 

So we went home and waited. We tried to keep as normal a routine as possible. I still walked him to school, even though he only walked a block or so at a time. On really cold days I would drive them. The waiting was the worst, if I didn’t have my phone with me at all times I thought I’d miss the call for his heart. It was very stressful for all of us as we all handled it differently. We were told he could be on the waiting list anywhere from 1-3 years because he was in the middle of severity in cases. However he was listed for only 3 months exactly!!

On January 4, 2016 we got the call! 1:30am...my husband’s phone rang, he talked for a few minutes, then put the phone on his pillow and walked away...he was shocked to say the least. I picked it up and started talking, getting all the necessary information. The plane had to fly into regina from Saskatoon first, so we had about an hour or so to get everything ready and be at the airport. We packed first then woke Alexander and his brother Cameron up so they could say goodbye it was heart wrenching. My mom had come to take care of Cameron while we were gone and would alternate between my in laws. The flight to Edmonton was very uneventful, thank goodness. We arrived at the Stollery around 4:00AM. We made our way up to 4C to be admitted and have all the tests done and lines ran. He was a trooper through mostly all of it . Ed made it to the hospital around lunchtime. There were only a few more tests to do and then we waited. Around 4:00pm they came to get Alexander and take him down to the operating room (this was before the new PCICU). We made it to the elevators and then he started crying, not loud, but those extremely scared, sad tears, the big crocodile ones that just silently fall down your face. I got to put him on the operating table myself (that was scary), they gave him some sedation and he never even knew I left. The surgery went off without a hitch. It couldn’t have gone more perfect. We were able to see him just before midnight. When we walked in I was blown away! I have NEVER seen him with pink fingers, pink toes, pink lips or pink eyelids!!! Every part was pink!!! His oxygen levels which were normally 69-80....were at 100!!! It was the greatest feeling in the world!! He was up and walking within 4-5 days. We moved up to 4C again where he continued with OT. The tests they did blew everyone away, he was making it all look so easy! So easy in fact that after only two weeks from his surgery, Alexander was discharged back to RMH! Never did we think it would go so smoothly! We continued to have follow bloodwork and appointments to make sure his meds were the dose needed and his numbers were where they needed to be. In the meantime Cameron was able to come visit and those two...they were so happy to see each other!! Since we were so close to being sent home to Regina Cameron just stayed with us for the last week. After 5 weeks in Edmonton, we were sent home. Once we were home Alexander just kept getting better and better. He could play with his brother for an hour without getting tired! We saw him do so much we never thought he’d even get the chance to try!

Two of my favourite stories: While we were in  Edmonton, the three of us were driving around. Ed stopped at a convenience store to grab a couple things. While he was inside, Alexander told me his hands felt like they were on fire. I of course was concerned thinking maybe he was getting a fever...I felt his hands and told him they were ok, they were just warm. And he said (I quote) “So that’s what warm hands feel like?” Omg I cried!!!

Second story: We have a lake in Regina, Wascana Lake, it is about 4km to walk around it. We were never able to finish the entire walk without having to carry Alexander or take the wagon or head back to the car before being halfway around. When we got home we went for a walk on March 4, exactly 2 months after his surgery. Alexander was able to keep up to us AND he even ran the equivalent of half way around the lake!! I couldn’t help but cry! We never in a million years thought we’d ever see him run....not like that! 4.5 years later and he is now in the top three fastest runners in his grade!

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