What a week it has been! I’ve been meaning to get this update posted, but I’ve just been having a hard time getting things done this week. Ruger is over whatever virus(es) had him so sick, but unfortunately his asthma medication is causing a lot of problems — So we are working on figuring all of that out, and it has been very stressful (that sentence is packed with a lot of backstory and stress that I won’t get into). I woke up Monday with total laryngitis, so we decided that I should stay home while Derek took Sunley to her Houston check up. I was beyond disappointed to miss it (understatement), and also disappointed to not get to see my friend whose son is inpatient right now, but I didn’t want to risk getting anyone sick. My mom still came up to help with the kids, so it was great having help while I was under the weather. Sunley had a fun time with her daddy, and she was being her silly self at the hospital.

Sunley’s checkup went well. Her Fontan is working as it should, and her heart measured at 53 (55+ would be enlarged, so she’s fine there), and her lungs looked clear. Saturations were at 98! Remember, for the first 4 years of her life they were 72-78, so 98 is still something we aren’t used to seeing. During the virus a couple of weeks ago, her saturations sank to 90, but she was just barely able to stay out of the hospital, and we are so grateful for that! Sunley’s echo showed regurgitation from her tricuspid and mitral valves, but nothing requiring any intervention, so that will just be something we watch. One weird thing that was noted on her X-ray were possible past minor compression fractures. We were all a little perplexed by that, and we plan to follow up with another specialist about that. I’m hoping that could give us a reason behind her increasing daily ankle/leg/neck pain, but we’ll see. Lots of Fontaners have those aches and pains, and I wish we could find something to help with that. We spoke with Sunley’s cardiologist about the Jiu Jitsu classes we have recently started (we didn’t clear this beforehand), and landed with kind of a rocky answer — not really yes or no. I think it will just have to be a decision as she grows and as Derek and I learn more about the demands and risks of the sport. Right now, she’s in a pretty tame 4-7 year old class, so it seems safe and we are continuing with them. This will also be something we discuss as we pursue more answers about those possible compression fractures. I’m wondering if these fractures could be basically bone damage from such low saturations for so long, but I have absolutely no idea.

Sunley’s next check up will be on June 20th, and we are also enrolling her then in the Fontan Go Program at Texas Children’s — this is the clinic for which our nonprofit, Write With Light Project, organized a fundraiser. And SO many of you helped with that effort. Sunley will be around the 40th or so patient to enroll, and we are so excited to see where it leads. There really is no telling how many kids will benefit from this.

We are cautiously optimistic for Sunley’s future. Despite her subtly-increasing leg pain, she seems unstoppable. I don’t like to think about the possible future complications that could arise from having a Fontan circulation, but I also don’t want to miss any symptoms that could go unnoticed for a while…and this adds a lot of pressure. So, I need to figure out how to balance it all, just as I did before the Fontan. In a lot of ways, it feels like we traded in one heart disease for another: We knew her pre-Fontan numbers, knew how her body typically dealt with colds and illnesses or physical exertion. Now, we are getting to know the new numbers, new limits, etc. And so far, her body has been dealing with illnesses much better. Starting at oxygen saturations of 98 instead of 72 is really a huge improvement. No matter what her future holds, she has her whole big family and tons of friends ready to walk the road with her.