Hi Everyone!

We have been putting off an update after we got home from the hospital until we could see Dr. Cordes (cardiology) and get a few of our questions answered. We went this morning and Jax got the “rockstar” stamp once again! Dr. Cordes said he looks great for everything he’s been through, which is wonderful hearing as we don’t think he looks quite up to where he usually does.

It’s taken quite a bit of time, but Jax is finally *almost* back to full speed. We went to our pediatrician the week we were released and found out Jax had been fighting a double ear infection on top of everything else. At the same time, his chest tube site became infected, so we attempted to use an antibiotic for both – two birds, one stone – except the two birds continued on even with the antibiotic, so we had to switch to another one. That one seemed to have done the trick and Jax was doing AWESOME, until yesterday when he woke up snottier than he’s been in a LONG time. Turns out his ears still aren’t great – we aren’t sure if this is the same infection or a new one, as he was doing so well post antibiotic number two. So here we are, on antibiotic number three. If you could please send some “whatever you dos” that this one completely kicks this to the curb, we would much appreciate it!

Today, Dr. Cordes gave us the wonderful news that Jax’s heart looks good. We can’t even tell you what a relief that is during ANY appointment, but especially this one post 6-week in the hospital. His pressures continue to decrease (what we want) and his heart function looks good. Jax’s oxygen saturations haven’t been where we want them to be since widening the fenestration in his heart, but Dr. Codres continues to remind us (more me) to be patient. He said he expects his saturations to be in the upper-80s -90s, but we need to give his body 3-6 months. If you’re new here, Dr. Cordes has always wanted Jax’s oxygen saturations to be 75-85% (normal is 98-100%). Jax was around 82% after his Norwood and 84% after his Hemi-Fontan. After we widened his fenestration, his saturations dropped to the low 70s. Needless to say that was pretty scary, as he’s never had saturations that low. Currently he hangs 78-83%, so we will continue to just be patient and let his body adjust to this new blood flow. Dr. Cordes also mentioned in approximately 1-2 yrs, and pending everything continues to be look good, we will close the fenestration (the hole we created in his heart) via cath. Doing this will give him even higher oxygen saturations. While he will never be the same as us with a 4-chamber heart, we would like them to be as high as we can safely get them! But that’s all for the future. For now, we will see Dr. Cordes again in 4-6 months to see where we are and if we can kick one of the medications he’s been on.

Jax has discovered a love of pumpkins and was able to *safely* visit two different pumpkin patches and even went to Harvest at Newfields! His sweet kid is all boy, loving all things monster trucks, airplanes, tractors and fire trucks – even more so if he can make them “crash.” We go on (almost) daily walks where Jax has a very specific list of things he wants to see while we are out that usually consists of buses (school and city), airplanes, the water tractor (I don’t even know what this is actually called), pumpkins, kitties, the fire truck and feed the ducks. Thankfully we are able to check off all of these things almost every walk!

We will be quite hunkered down this fall/winter – between flu season and COVID, we just can’t risk it. We will again, like the previous winters, pick and choose the activities we do based on how safe it is. First up, Halloween (to those houses we have deemed “safe”) in the very specific costume of an orange dinosaur. If you know Jon, you know it’s absolutely KILLING HIM that Jax has requested such a generic, off the shelf costume. 😂

We can’t thank you enough for all of you love and support over the last few years, and especially during this last hospital stay. We love you all so much.

We will continue to keep you updated, even if it’s just a few pictures here and there!! Please stay safe and hope to see you all soon!

#moosestrong #jaxsonstrong

Love,
Ashley, Jon & Jax