Patience...

We knew at some point we'd hit a road block. And this is it; the first one at least. So far, Conley hasn't required dialysis because his lab work and blood pressures have been steady. But, that can only last so long with a kiddo that has no way to eliminate fluid or waste, or have a way to clean his blood without the help of a machine.

Today, the plan was to do dialysis, but it seems that Conley's catheter (the line that goes directly into his heart that allows for dialysis to happen) is clotted. This means that dialysis cannot happen until the clot clears. This is not a great scenario. Right now, he is stable, but at some point, he will need dialysis and this clot needs to be resolved as soon as possible. The doctors have already done the noninvasive procedures to help clear the clot, like injecting a blood thinner into the catheter, but apparently the clot is too big to be cleared so easily. The next step is to have radiology attempt to clear the clot with alternate noninvasive procedures, with hopes to avoid surgery (again). All this has to be done before he can get dialysis, and it has almost been four days since he last had dialysis. Usually, he gets it every other day, so the fact that he has gone this long is amazing (yet scary). The "grace period" will soon run out.

What is frustrating as a parent is that Conley is not critical "yet," and because it is Sunday, the hospital does not feel that this needs to be addressed today. The staffing is not here and the scheduler is gone. What?! My son has an alloted amount of time to get this clot cleared, and you are telling me I have to sit here and let over 12 hours go by just waiting because it is the weekend. It's frustrating. Meanwhile, my son has not eaten in four days, and you want me to sit here and be patient. 

But, there's not much I can do. I've tried advocating, and listened to the doctor's reasoning, and have purposely decided to put my faith in their decision to wait. (This wasn't my first reaction). Patience is not my best quality, especially when it comes to advocating for my children. But so much is out of our control with chronically ill children, and choosing to be patient is all we can do.

Conley is still slightly sedated and has not fully woken up because his body cannot eliminate pain medication on it's own. Another reason he needs dialysis. All the crap that has gone in his body is sitting there because he does not urinate and his kidneys cannot eliminate the waste. But, overall, he seems comfortable, so I will focus on that. And, we are thankful that he has remained stable and able to maintain without dialysis. These are the things I choose to focus on today.

The picture attached shows what I look like standing at the door to Conley's room. So appropriately given to me by another kidney mom :) that's right. Don't mess with my son.