Cath anyone?

Caelen is doing well in the step down unit, but his oxygen requirements during the day are still unchanged. He's only on 1 liter of o2, but he's only sitting in the low 70's. When he sleeps he's in the upper 70's, which for him is fine. But he is on the bluer side.

Dr Rome has an idea and we'll be going back to the cath lab sometime this week to stop the blue blood leaking from the Fontan take down. The idea being that once the leak stops, Caelen will get more oxygenated blood and his sats will improve.

It's called a covered stent and it's not approved here in the US. It is in every other civilized nation, but the FDA hasn't given it the ok yet. It can only get approval though a compassionate care basis, and this is how Dr Rome will get it approved for us. The compassionate care being the cath lab as opposed to cracking Caelen's sternum again and completely taking down the Fontan. Because Caelen has had such a rough go of it, surgery is definitely not compassionate.

There is a ton of paperwork involved for Dr's Rome and Spray, but nothing for me to have to do, well except to pray. Fortunately Dr Rome has used this device before, just not in Caelen's circumstances. So once again, Caelen makes case study. I think he needs a medical journal written about him. He's racking up too many case studies to count.

But all in all, Caelen is doing very well. He's happy as long as no one touches him or messes with him, and he's talking more and more every day. He's using a lot more words than he did before the surgery, and I'm so beyond grateful that he doesn't have any neurological deficits. To come through every thing that Caelen has, and to maintain his beautiful personality makes me realize that once again, we have been granted a miracle. I know I prayed HARD for a miracle, as did many of you, and I just want to say THANK YOU!

I ask that you still keep Caelen in your prayers, as well as the many children here in the hospital. In particular, our friend George and another friend Khloe. All of these heart kids are miracles, and I get to witness it every day.

Love,
Katye