What an all around pleasant day today is.
Yesterday was a hard day for me. I was already kind of down. They have been decorating for Christmas and that caught me off guard with how upset it made me. (just… reminders of last December.) It’s been a really rough admission. I was forced to come to grips yet again with the reality that Kidney Failure is often fatal for babies. One of our doctors reminded me herself that we’re pretty lucky to even still have him. Yeah. I know.
There was a whole thing with the nutritionist that I’ll discuss later.
I miss my kids. This whole thing sucks. I was just down.
His 12th surgery? TWELVE. Nobody should have to do that. Twelve. Holding him down for IVs and labs and he just screams and screams and looks at me like “why are you letting them do this to me, mama?”
SUCKS. THIS ALL SUCKS. I can’t say more than that. It sucks. I wish there were a word that meant something like “sucky to the extreme.” That’s the word this is, but maybe more so.
So I cried most of the day.
I cried while he was in the OR. I cried in recovery. I cried in his room afterwards. I cried all morning, literally. My friend Shanen came to visit and brought me McD’s and I did not cry while she was here, and then I cried after she left. And then I cried with our nurse. And she was super great and talked to me a little and hung out a bit. And then I cried in front of Dr. Jetton, and she cried a little. It’s just been hard. And that damn wreath. Some online friends checked in with me periodically, which was nice and helped a little, mostly just from a “it’s ok to have a down day, I get it” standpoint. They made me feel less silly for being so weepy.
And then I felt better. Today started with a lab draw that went OK, and then a talk with Dr Jetton and the nutritionist that went as good as I could have hoped (which wasn’t great but that’s ok). Then I had coffee with Jamie, another kidney mom here, which was really nice. We’ve emailed back and forth but not really had a chance to chat in person, and I really like her. (and she reads this blog, so Hi, Jamie.) Just chatting with someone who gets it and who’s been through it.
Today we have our favorite nurse Kelsey, who has neglected to mention their Primary Nurse program thingie, where I can put her down on my “sheet” as being our preferred nurse, so we get her automatically any time we’re in if she’s working. Where was she with THAT tidbit about 4 admissions ago, huh??
Strolled down to the dialysis unit with Jamie to say hi to one of the gals down there (and to avoid going back to our room) and Dr Jetton steps out and says, “hey, would you like to go home today?” Um… sure. So – We’re going HOME!!! YAY. Hopefully to stay. Nobody seems as flat-out scared as I am about what the future holds. I’m terrified. I don’t think I’ve been this worried since those first weeks in the NICU.
But we have a plan in place. Weekly labs in Des Moines, coming back here every other week at first. If this No Dialysis thing doesn’t work out, we think about having the transplant surgeon look at him to see if another PD Catheter is a possibility and we give PD another shot. (at our option – Dr Jetton said we could certainly turn this down if we wanted, but we talked about it and it seems like a much better choice than the alternative.) If PD isn’t a possibility at that point (when he’s hopefully a little bigger and his insides have healed up), then he’ll have to do hemodialysis until transplant.
(and at that point, I’ll start talking to other transplant centers about him, as well.)
I also met Amy, the transplant coordinator, today. She’s going to get the ball rolling. Insurance approval is the first step, then she’ll start setting up appointments with everyone on the transplant team… yikes!
The big sad part about today is that we lose Jen as our nurse. Jen’s been with us since the beginning. We’ve spent literally hours together up in the dialysis unit, in Teddy’s hospital rooms, etc. Teddy loves her. She loves him. I love her. She is completely OCD, which meshes well with my personality. She checks his Xray and lab reports from home. She cares. And since Teddy is no longer a dialysis patient and has no catheter, we don’t get to keep coming up to the unit. We have to go to Peds Speciality and just have whatever nurse happens to be hanging around that day. stinky. I’m really bummed about this. I didn’t think we’d lose Jen until he got his transplant, and I was already pre-sad about that, to be honest.