Alexander's Adventure

4 years ago Alex had his 3rd open heart surgery!! He is still doing amazing and continues to surprise us daily! It’s been a hot moment so here are some updated pics of Alex!
He is 46lbs (2nd percentile 😬🤣)
Crushing 3rd grade!
And still lives an adventurous life full of love from many ❤️

1/9/23-

Alex had a check up today! And it went well but also got real. The good news… Alex is 3ft 11in, he lost a little weight but rang in at 40lbs, and his oxygen was good at 96! His blood pressure was good but I can’t remember the numbers 😬🤣🤷🏼‍♀️.

I have always been completely transparent on this page and I will always continue to do so. First I will start off by saying that Alex’s heart is in great shape! The dr said he has one of the best out of the single ventricle kids that he see’s. But let’s back up a bit…. We were told when he was a baby that we would possibly start seeing organ failure starting between the ages 10-12. That always felt like forever away, but Alex is 8 now, so it’s not so far away. Today during the appt we started the “real” talk of what comes next. Now, none of these things that I am writing about are guaranteed things to happen, how ever Alex’s chances are higher due to his defect. It comes with the territory.

Next year they will run some tests to make sure that his heart is still doing well, they don’t think there will be any issues, it will just be time to check up. When he is 10, the standard will be to start taking a deeper look at his organs. That being said Alex’s liver is already enlarged. It is enlarged a “normal” amount following the fontan surgery that he had. This means that he will have a higher chance of fibrosis, which could lead to cirrhosis, and there is a SMALL chance that it could lead to hematocellular carcinoma, aka liver cancer. There is already a plan in place, and tests that are standard to run. We will meet with many doctors for an all day event of MRI’s, CT’s, a liver sonogram, a cath, and some blood work to see how all his organs are functioning at that time. This is normal stuff for single ventricle kids as they hit this age. They mentioned that IF for any reason any of the doctors suspect anything wrong, then he will start following the transplant team more closely. This does not mean he will need a transplant, this will be just staying on top of things as a precaution.

While all these things are things we knew were coming, it is scary. I don’t know if I just didn’t believe that we would never see age 10, or if I have just done a good job on focusing on the now. But to me 2 years is going to go by so fast, and before you know it he will be going through all this testing. I am already nervous, I know it’ll pass, and then become more prevalent when the time is closer. But for now I will focus on the now! And I will replay the words “his heart is in great shape” in my head on repeat. I knew this road would be bumpy, but I also know that he will still grow to do amazing things, and I am blessed to get to be his mommy, and I will love every darn minute of it.

I promised to share his journey and I will always continue to do so, the good the bad and the ugly. I know my heart mommas out there can relate. Thank you for reading my long post! I hope you all are doing wonderful!! The picture of him signing a paper, is him agreeing for them to use his journey and some blood they took in the past to help other kids like him and help doctors learn more about chd! ❤️🥰 (yes we signed it too).

Love you bug 😘