Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Iowa City Trips Just Frustrate Me These Days

on June 18, 2013

Part of it is just that I’m just plain worn out. 18 months of this – the longest I’ve gone between drives to IC has been 3 weeks, and that’s been RARE to go that long. I’m just tired of it. And I’m lately more aware of the fact that this is what life is just always going to be like. This isn’t going away. I mean, it’s not like I haven’t known that – always known that – but it’s more front-of-mind recently. And that thought wears me out.

And this constant One More Thing, One More Lead To Chase is wearing me down.

It’s like the TV show 24, where they chase down one lead, and it inevitably leads them to another lead, and then another, and another, and they have to chase down each one to get them to the next one… and eventually, they catch the terrorist (who inevitably has Jack’s daughter or current love interest as a hostage, lol). Except, in 24, they chase down all the leads in 24 hours. This is going to take considerably longer.

Maybe it’s more like Quantum Leap. Each test or visit, we leap into a different possible diagnosis, hoping that the next leap will be the leap home.

And we’ve always had some sort of plan. First, it was to manage Teddy’s kidney failure medically until he was so unstable that we decided he needed dialysis, and then we’d start dialysis and do that until 10 kilos, at which point we’d proceed with transplant plans. And then that didn’t quite work out, so we moved to the next plan: transplant¬† Teddy as soon as possible. And that didn’t work out. So now, our plan is…

what?

What is our plan? I don’t know. We don’t have one. Manage Teddy’s kidney failure medically until he gets more unstable again, and then give PD another shot is part of the plan… but the other part of the plan is a big question mark. It’s leaping from one guess to another until we happen to land on the right one. Evidently, it’s chasing down every single lead until it fizzles out.

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2 responses to “Iowa City Trips Just Frustrate Me These Days

  1. Cindy Duit says:

    I’m not sure if my email will get to you.i live in Nevada Ia and follow your posts. I love reading them!! I remember the never ending cycle with my daughter when she was born with kidney disease then after transplant. For our daughter she had GI problems we chased then pancreatitis due to renal failure. When you get to transplant it will be lots of visits for a while but it can get better. My daughter grew up at UI. Her playground was the Hakka, her hills to roll down the Ramos connecting the old part with the new. And we let her roll. Many times her iv came out and we’d be admonished but it was so worth it!! If you want to talk or be in touch I am here. When Ashlie was 7 I donated a kidney and after that we rarely went back. We even transferred to DSM to be closer for care. I remember having many come to Jesus meetings with the medicals to get us all on the same page and understanding of what was happening or going to happen. I remember you all in my prayers and know there are many of us out here who have walked this path.

    Don’t lose hope…I know you haven’t but I know that feeling of frustration that this is your forever life!! I remember When Ashlie was 5 shed had enough, bought some play handcuffs and used them on her resident doc when she was admired yet again. She refused to let him leave until he pinky swore and promised shed only be there for two night at the most. He did and he honored it. I talked to him later and explained what it’s like in our side if the fence and how she felt. He was wonderful, making sure each time after he had a plan, we got things taken care of and hot her out fast. :).

    Best luck to you!! Please don’t be afraid to reach out if you want to talk or vent!! Sincerely,

    Cindy Duit

    Os. Is Dr Porter still there in nephrology? Sent from my iPhone

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