Crying and blogging

I just re read my last post and geeze, there were a lot of typos and mistakes. Perhaps I shouldn't try and blog through tears anymore.

Sometimes I use this blog to vent, and clearly yesterday was one of those days. Thank you for the kind and supportive messages.

Caelen had a good night. I think that he coughed up and then swallowed the cast yesterday during the IV. His breathing is a bit more comfortable and his sats are a bit better too. We have weaned his oxygen back to 2 liters from 3 and we'll see how he does today. But so far so good. He's in a great mood and has been walking/escaping down the halls without oxygen of course, and staring at himself in every reflective surface he can find. He's also been serenading the nurses with country music.

In rounds it was decided to do nothing except wait for the heart transplant team to come and consult with us. That won't be until Monday. Depending on their assessment of Caelen, they may want a cath, ugh. And they will need a lot of blood for labs. So we just wait and see.

In the meantime, one of his diuretics was added back to see if that helps with the casts. The diuril was weaned off during his last clinic visit almost 3 weeks ago, kind of around the time the casts increase. So that's one theory we're working with.

Because my brain is so frazzled, I can't remember if I mentioned why heart transplant team has been consulted. There is no cure for plastic bronchitis. If it cant be managed, and continues to get worse, it is deadly as it literally obstructs his airway. The danger being that if one gets stuck, and he can't clear it, he will choke. Think of it has choking from the inside out. So, when PB gets to the point that it worsens and doesn't respond to treatment, then a heart transplant becomes the only option. In most cases, the PB stops, but it can continue in some cases for a time.

What causes PB? High PVR's (pulmonary pressures) from the heart defect and successive surgeries. So the theory being that by getting a heathy heart, it eases the pressures on the rest of his system, including his kidneys and liver, where pressures are known to back to up. Specifically the liver.

For my medical friends, feel free to comment with corrections, but I think I'm getting the basics covered.

So that's where we're at. We are trying to get the PB under control for a while, but eventually, he will need a new heart. We just want to try and get a few more years before we go the transplant route. Once I meet with transplant on Monday I'll have a better idea of the process.

Please continue to keep Caelen in your prayers. If there is one thing I could ask God for, it would be for the plastic bronchitis to stop.

Love,
Katye