Cardiology Today

We had a cardiology appointment today, bright and early. As we were exiting the freeway, Owen saw the hospital and got really excited. He LOVES to go places... but the hospital... that had us laughing.

Owen's sats were low today...70 on 1/4 liter, 74 on 1/2 and then 65 when we took him off to go weigh him. He was delightful and cooperative. He loves when they take his "beep beeps" (translation: blood pressure and o2). His weight was down to 28lbs again. Not cool. He was up to 29.5 at our last visit four weeks ago. This virus really did a number on him.

His length was the same, so at least he didn't shrink. Ha.

He has been wiped out, which is to be expected. I just hope it doesn't take him too much longer to recover. The poor little guy is breathless when he plays and he'll roll himself in the middle of the floor and just lie there for an hour or so. Happy. But relaxing.

Another concern we have is that his blood pressure remains really low. Too low to increase his medications at all. We are stuck. There is nowhere to go from here. If his sats are going to start decreasing and he's getting exhausted easier.. what do we do from here?

Dr Stock scheduled him for an echo in five weeks and he suggested I contact Stanford about moving up his Cath date. He is currently scheduled for the third week in October, but we're not sure we should wait that long. How much longer can he go before he needs to be listed for a heart? That is the main question. Who makes the decision? Stanford.

Why wait to list him?? I hear that question all the time. So here is the best answer I have been given. Right now, Owen is pretty stable with his own heart. He's not thriving, which is heartbreaking. He is growing and developing (a little behind schedule), but he's moving along. With transplant comes it's own complications and we are only trading one heart problem for another. He will need biopsies frequently. He will be immunosuppressed. I'm sure he will be fighting rejection like crazy because of his naughty antibodies. His are significantly sensitized at 98%. We'll have lots of pre-transplant treatments of IVIG, and post-transplant treatments, including plasmapheresis. He may not make it. The reality of what lies ahead is frightening.

He is home and remains stable on his many (incredibly large doses) of medications. His oxygen remains between 75-80 with continuous flow between 1/4-1 liter. He doesn't eat, he doesn't walk (yet, but that has alot to do with stubbornness) and he just can't keep up. A new heart will give him the energy, that he never knew existed.

Transplant is inevitable. I don't know when but I always have it on my mind. I will enjoy the next five weeks before the echo. It's also the last five weeks that Kamryn is home from school.

As we were leaving the hospital today, Owen kept saying "Moooorrreee beep beeps!!" Over and over and over again....

Don't worry buddy... we'll be back all too soon!