Kayden's Journey: Home Sweet Home!

Well, it feels great to say that we are finally home! It has been quite the journey so far and is great to know that the hardest parts are behind us. Now comes the recovery which will be a little challenging because he is feeling really good and feels like he can do more than he should! I have to say, that is a great problem to have!

Kayden ended up staying in isolation until he was discharged on Monday. They never did exactly find out the cause of the rash but they don't think it was from any infection. They say it could be from the linen, medication, band-aids, who knows. The good thing is, the rash is getting better and the Benadryl and hydro cortisone cream are helping a lot. They took a couple samples of Kayden on Saturday and he ended up testing positive for RSV, which for older kids and adults is basically just a common cold. He still have a little bit of a runny nose but not really any coughing or sneezing. I am very happy about this because it is quite painful for Kayden to cough or sneeze right now, so hopefully his little cold will not get any worse. During the week, the staff had talked about the possibility of discharge on the weekend. Me and Rodrigo both looked at each other in disbelief because it seemed like he was no where close to being ready. The hospital staff told us that when they start to turn around it is amazing for fast they start the feel better. Boy were they right! On the weekend, Kayden began to move around so much better. Simple tasks, like repositioning himself in bed and sitting up, seemed to be come much more comfortable for him. Although he couldn't leave his room to go for a walk, we were all so surprised at how speedy he was when he walked to the bathroom. We could barely keep up with the I.V. pole!

On Monday, he was doing so good, I was pretty sure that he would get discharged, but we were trying not to get too excited until we actually heard those words. The staff did their rounds and the cardiologist said that they had found some narrowing in the conduit on the echo that they did on Friday and he would need to take a look at it before he was discharged. He had come this far and had gone through so much, that it was hard to hear that there was possibly another set back. The cardiologist on call, looked at the echo report and told us that there was indeed some narrowing of the conduit were they had stitched it in (where it branches off to the right and left pulmonary artery). He also said that the narrowing was quite significant but there was nothing that they would need to do right know and that a more accurate number would achieved from another echo in a couple of week. I know the doctor was trying to reassure us when he said that it was still better that what he came in with, but that was not the news we were hoping for. The doctor also said that some of the narrowing could be caused by inflammation and that after the heart heals and settles down, it may look a little different. We have been trying to focus on the fact that Kayden's surgery is finally over and he is doing so great, but can't stop worrying about what's to come for our little man. I know I need to leave this in the Lords hand and that he will be with us every step of the way.

After discharge on Monday, Kayden got to come to the hotel, and then we would be flying out at noon the next day. Kayden was so excited to be out of the hospital! We had a great rest of the day at the hotel and even had some visitors. It was a great night knowing that everyone was under one roof and even though we weren't at home, it didn't matter at all. The boys were excited about going on the plane the next day and knew that it was one step closer to coming home. A lady on the plane asked if we were coming home from vacation and couldn't believe when I told her that Kayden had just had open heart surgery just over a week ago. He looks so good, you would never know! We ended up staying in Winnipeg for an extra night because they wanted to see him the next day at the Variety Heart Center. Here they took out the stitch from his chest tube and did an echo of his heart to check the narrowing. We were pleased to hear that the narrowing has improved a bit and that they will see him again in the couple of weeks for another echo and may possibly do a lung perfusion test before that appointment to get a better idea how everything is working. Although there is still narrowing, it was nice to hear of the improvement and we will be praying over the next couple of weeks that the narrowing will continue to improve on it's own. Kayden's cardiologist was not there today, but I asked the nurse what it would mean for Kayden if the narrowing did not change and it sounds like they would maybe go in through his groan (like a heart cath) and widening it up with a balloon. It also sounds like this would only happen a few years down the road and would need to be done in Edmonton. She told us not the focus on this and we would have a better idea in a couple of weeks when we see the cardiologist.

The boys are so happy to be home and play with their things and just be in there own house again. Kayden keeps saying that it's so good to be home! For now, Kayden will need to take it easy, as a full recovery is six weeks. We will see how things go, but he will most likely return to school in about a week and a half and probably start with half days. He wants take a trip to school in the next couple of days and bring a snack and visit his classmates. He will be very excited to return to school and all of his activities.

I will definitely be keeping the blog up for awhile and keep everyone posted on Kayden's recovery and upcoming appointments. We couldn't have done this without everyone's support and prayers. I know that I keep saying this, but words can't even begin to express how thankful we are.