Our Teddy Bear's Journey

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

Plans for The Big Day.

on May 2, 2013

Today, we had to run out to Iowa City just for a quick check in light of the issues Teddy’s been dealing with in the last week. (Namely, a 103 degree fever one day, and a fungal infection in his diaper area and around his Gtube stoma.) It had the potential to be a real waste of a trip (particularly in light of the weather today – snow in Des Moines), but I’m very glad we went. Here’s what we learned today, in no particular order:

His PTH (parathyroid hormone) continues to climb, despite increasing the dose of his calcitriol. (Calcitriol is an activated vitamin D that generally helps keep the PTH in check. PTH and vitamin D and phosphorous and calcium are all related to each other and to bone growth and inability to regulate this is something that just goes along with kidney failure.  http://www.kidney.org.uk/Medical-Info/Calcium-Phosphate/)  Going in to transplant with such a high PTH (his was 900 something this morning, normal is 9-52), the doctor said that we can generally expect that we’ll have a tough time getting his electrolytes balanced after the transplant. 😦

Though we had originally been told that Teddy would be extubated (breathing tube removed) in the OR, the plan has changed now and he will be intubated for 2-3 days after the surgery. He’s never come back from the OR with a breathing tube, even when he was itty bitty, so that’ll be something new for us.

We had originally been told that we would probably be home in about a week, but today I was told to plan on 2 weeks.

Teddy’s surgery will start probably around the same time as Tiff’s. We had all been thinking that his surgery would start later (because, of course, they have to first get the kidney out of her), but I hadn’t taken into account that they also need time to remove Teddy’s kidneys first. So while they’re working on getting out Tiff’s kidney, they’ll also be working on getting out both of Teddy’s kidneys. I hope they first visually inspect her kidney before COMPLETELY removing both of his kidneys, just in case, lol.

The surgeon we met a few months ago who was going to be the one doing the surgery was a man – now it’s a woman named Dr. Stewart. And that’s totally fine – but it has me wondering if that’s what’s prompting a lot of the changes to what we thought was the original plan. I checked her out on the UIHC website and she a) looks old enough and b) has a nice background. 🙂

Met the new nutritionist. LOVE HER. First, she used to be an LC 20-25 years ago. Awesome. Second, she thinks blenderized diets are great and she used to do them a lot at her old hospital. She used to have some fancy pants software that helped her calculate everything, but she said UIHC won’t buy it for her. THAT is disappointing. I asked about the BD immediately post-txp in the hospital and she said using canned formula is certainly easier on THEM and is also easier for sanitary reasons, but a blenderized diet will certainly work and it’s their job to work with what the families want. She saw no reason to move away from the BD immediately post transplant. YAY. Yeah, so I think we’ll get along GREAT since every conversation won’t need to be an argument about formula. She said that the continuous feeds on BD was fine as long as I was being careful to use an ice pack and switch out the ice pack every few hours. Then she apologized for asking such basic questions and I told her that I absolutely understood why she asked and that I appreciated being treated like a competent adult. 🙂

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: