Post Fontan Life

You guys....We have been so busy getting back to normal that I hardly have any good photos of our sweet boy. He started preschool the beginning of October and it is still an adjustment. Stockton got sick the first day, of course, so we missed a week and then he was back. He loves his teacher and all the great things his school offers. They are so great with him and they have so much patience.

We went on a trip to St. George which was a great getaway for us. It was nice to see how well he did in the heat. He was thirsty a lot but overall did better than before.

Stockton has so much energy now. He runs, jumps, twirls, screams and plays more than ever. His oxygen SATs right now are at 97%! Can you believe that?  When he had his four year check up last week we saw his oxygen and Seth quickly gave me a hi-five. We are so excited for this new journey we are on.

A lot of people ask me, "What is next?" Well, it's kind of unclear at this point. We just take day by day and year by year from now on. This surgery puts a lot of pressure on the liver so that will be monitored very closely. He still has his leg pains some nights but they are far and few between right now. There is a possibility that he could need a Fontan revision in the future if his heart needs it. Stockton will need a transplant in the future, that is inevitable. We just hope we can wait 20 years. Our hopes are really high for him and we want him to experience as much as he can. We have decided to hold him back a year in school. He has a late summer birthday so rather than starting Kindergarten next year at age 5, he will start the following at age 6. He still takes 1 hour naps during the day and most of the time I lay with him. It's nice to get that time with him. He bounced back from this last surgery so quickly. His weight and height are up and he continues to be a big boy. We will have a check up in February then go to Texas again next summer for a follow up. We have been told that the high elevation  we are at could create some pressure issues for him. We are monitoring those. If the elevation is a problem in the future we will move, most likely to Arizona.

Merrick and Tylee have adjusted to us being home. I think they loved staying at their Grandma's house while we were in Texas. They are such wonderful siblings and they know so much about Stockton's heart. Even Merrick asks questions or tells people about it. They truly are the best playmates for him.

 

Seth and I are back at work creating our new "healthy" normal. We are a good team. Without that man by my side, I couldn't do it. We owe a lot of hope and calmness to God and we thank him daily. We hope our family continues on this path of strength and optimism. Thank you all for all the prayers and kind words. We couldn't do it without you either.