Good News Bad News

Holden handled his cath procedure very well today. We are so proud of him! This was the first time we were truly able to be an outpatient and did not end up in the CICU!! They had no problems extubated him and he was brought back to his own room to recover. Initially, he was agitated and seemed to be in some pain. But after a mild sedative and some Tylenol, he calmed down and took a much needed nap. He was released around 3PM this afternoon and we are all now home and resting.

The results of the cath brought both good news and bad news today. And in my opinion, the good news is really good, but the bad news is really bad. First the good stuff: the pulmonary hypertension pressures have decreased, the ASD is getting smaller on it's own so doctors are not recommending surgery at this time and finally, 3 of the 4 pulmonary veins look good - free of stenosis.

But bad: Doctors say Holden's upper left pulmonary vein has deteriorated and is no longer providing blood to the heart. His body has, however, somewhat replumbed itself and some of the blood is now flowing through capillaries to his lower left pulmonary vein. Pulmonary vein stenosis is extremely rare (and often incurable), so doctors still have a lot to learn about the disease. But they did say that typically the body needs all 4 veins functioning properly and it would be hard to make it with just 3 veins.

It is days like these that make it hard to have the blog. What I am about to say is raw emotion, and pure exhaustion talking. But it is honest. And while I would much rather crawl into bed and cry - I have chosen to share this journey with you. And I am still glad I did. The good and bad. And despite what we learned today, I still have hope and faith. NO ONE can take that from me. I am sure some of you think I'm crazy when I say this, but I continue to hear a voice telling me everything is going to be okay. I have to believe that "by everything" the voice means Holden. And against all odds, I choose to believe in a miracle. So God forbid we don't get our miracle, then maybe I was crazy and y'all can come visit me in a mental institution (do they still have these around??) because I can not imagine my world without Holden.

So after only getting 2 hours of sleep last night - I'll use tonight to recharge and hopefully catch up on some much needed rest. And then I'll wake up tomorrow morning - expecting each day to bring us closer to a miracle for Holden. God Bless!