Free pass to A7 Central

Max is at Children's right now. He woke up this morning looking like he had just finished running a marathon. I was hoping that his breathing would ease up a bit after I got him out of bed but it seemed to get worse, so I cancelled all of our plans for the day and called Dr. Ben instead. That landed us a free pass to CCHMC's A7 Central floor. It wasn't Dr. Ben's fault this time though. The attending that was on today didn't feel comfortable sending him home with all of the retractions he was having so she wanted to admit him for observation.

Of course as soon as we got admitted Max's breathing eased up and he thought we were here for playtime. I was sitting here on the verge of breaking down while Max sat in his crib and laughed all day long. He thinks it's hilarious. I just sit here and wonder why?

So what's the plan? Max is on a 16 hour dialysis run right now. He is actually half way through it at this point considering it's 11:45pm. He is doing very well and draining beautifully. He hasn't been having this luck at home and that's why we are here. Max's PD hasn't been going well for about a week now and we were having a difficult time getting him to drain all of the fluid, so he was ending up with a negative total UF (ultra filtrate). Over the course of a few days this was causing him to have a diffiult time breathing because of the extra fluid he was holding onto.

So, instead of his regular PD prescription of 12 hours and 8 cycles, he is doing 16 hours and 16 cycles. This means that the fluid isn't sitting in his pertoneal cavity as long which is preventing his body from absorbing it like he was at home. He would dwell for 1 hour and 7 minutes at home whereas here he is only dwelling for 37 minutes- then he drains. Does that make sense?

We were told that this should only be a 24 hour stay. I packed for 2 days just in case. There is a slight chance that there is something blocking the end of Max's catheter. If this is the case he will be going into surgery sometime tomorrow. I don't think this is what's happening considering how well the dialysis is going tonight.

I will keep you all posted on how the rest of the treatment goes and what tomorrow holds in store for Max.

Prayers are greatly appreciated. If you wouldn't mind asking the Big Man upstairs to give us a daggone break, I would appreciate it as well.

PS: Dr. Ben is on a mission to get us a transplant date ASAP. Hopefully we will be able to put this stress behind us very soon.