PB update

Caelen is doing well, he's playing and running amuck around the halls of the hospital. He's been in a great mood and is very funny, especially when he streaks at bath time. He keeps escaping from me by ripping off his oxygen and taking off down the halls, closing other patients doors so he can see his reflection. Clearly he's not bothered too much by being here in the hospital.

I think the nebulizer treatments he's getting around the clock are helping. As it sits, the tentative plan is to go to cath lab on Friday if they can squeeze us in. It hasn't been confirmed with scheduling yet, but that's the talk amongst the team. We are hoping to do a bronchoscopy first to see if there are any casts in his lungs and if so, clear them. The cath is part of the transplant evaluation, so Dr Rome will be trying to get pulmonary pressures, which they haven't gotten in a long time, because they don't have access, and measuring the pressures inside his heart. But we also hope that Dr Rome finds something fixable, something leaking or narrowed or something that is causing the PB that can be fixed. I hate to say it, but I want there to be an easily fixable problem with Caelen.

Once the results from the cath go to the transplant team, they will review at surgical conference next Tuesday, and we may have an answer as to candidacy next week, and whether Caelen needs just heart, or heart and lungs. I pray that it is not heart and lungs, because the longevity is very short, and the success rate low.

It's incredibly hard to look at my beautiful boy and see how full of life he is, and how active and spunky and brilliant he is, and know that he is critically ill. I guess I just keep readjusting my baseline for him, but I haven't wanted to see what so many others do, that Caelen is sick. It doesn't phase me that he is on 20 meds a day and continuous oxygen, and breathing treatments round the clock. I see a perfect little boy, a perfect soul that has touched so many people, and reunited many. A beaming life force that isn't ready to dim. I see an angel that has no clue that he has anything wrong with him. I'm not ready to give up, and I believe that we can get the PB under control. I have to. Because the alternative isn't good. Transplant for Caelen will be very risky we've been warned. But I have to have hope. Maybe I'm naive, but my gut, my intuition tells me that Caelen's got more time. That he has a bigger future. Maybe that's just the mom in me that doesn't want to give up on my son. But that's what I'm going to hold on to, the Love and Faith I have in Caelen and in God.

Alright, no more crying and blogging for me tonight. I'm going to enjoy my little sleeping miracle and look forward to his shenanigans tomorrow. My beautiful, funny little boy.

Love,
Katye