So...I had one of those days. Those days were something kind of sets me off a little bit and then I cry kind of a lot, kind of randomly throughout the day. My day started with an email from our nephrologist that said this:
Blake's x-ray that we did in May when he was admitted showed that his dialysis (PD) catheter is much higher then it once was because he has grown so much, so here are your options:
1.
Go
ahead and replace the PD catheter now – this will buy us some more time
to work out the logistics of bladder augment and living donor. He would
likely need
to stay in the hospital for several days (maybe a week) after as we
will have to dialyze with very low volumes for a while and gradually
work up so that his new catheter doesn’t leak.
2.
Push
ahead with bladder augment and possible conversion to hemo – maybe
consider deceased donor? Not sure how the living donor situation is
looking?
3.
Continue to limp along with this catheter as long as possible if it looks like there is a living donor on the horizon?
If I'm being completely honest, I can tell you that I was expecting an email like this. I knew since Blakers has had that catheter since he was only a week or two old that the chances of it lasting much longer were very slim. He hasn't been draining as well at night. I just knew it. I could feel it.
I just got frustrated with the fact that we haven't found a donor yet. Option number two is just seriously not an option at this point. Five days a week in Iowa City without a definite end in site would be just insane. My full time job would be Blake. And hemo dialysis. I have three other children. And a husband. And a job. And other stuff.
Anyway, the good news is that Dr. Jetton has emailed the surgeons about possibly setting something up for surgery for a new PD catheter in July/early August. More hospital time isn't what we are wanting, but it looks like it's inevitable. We head down tomorrow for a regular clinic visit, so I will let you know what I find out.
Also, another thing that made me cry this morning was this...
It's so incredibly perfect and was posted by another kidney mom friend of me. I so needed to see that. :)
Catching up on blog reading tonight.... hang in there. I am hoping all is well and that the surgery you have scheduled will help move things in the right direction. Let us know what we can do to help!
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