Our Teddy Bear's Journey

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

Nighty Night

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Teddy’s started sleeping on his belly. Not just on his belly, but sitting next to me flopped over with his head on my lap. Once he gets soundly asleep, I scoot him onto the bed, and he flops over to his belly on the bed and wiggles around until he gets his head in my armpit.
Not sure what we’re going to do in the hospital, lol.

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News Coverage

Teddy’s been hitting the airwaves lately. 🙂

If you’re interested, here’s a link to the clip from channel 5:
http://www.myabc5.com/story/21813189/baby-teddy-needs-a-transplant

And here’s a link to the clip from Channel 8:
http://www.kcci.com/news/central-iowa/Woman-donates-kidney-to-toddler/-/9357080/19438250/-/1sb2sgz/-/index.html

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Teddy’s cart

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It’s just a Melissa and Doug wooden crate that held wooden food with 4 casters glued to the bottom with construction glue.
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His feeding pump bag goes inside it. As Teddy crawls around the house, the feeding pump trails along behind him. It’s not entirely perfect, of course. It gets caught on corners, on toys, on chairs. But it’s better than nothing!
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Sorry for the blur there. Teddy moves FAST, lol.

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6 Weeks to Go: Panic

Last week, I decided I was in Transition.

Transition. When you’re in labor, at least an unmedicated one (could be for medicated, too, I don’t know), when you reach the end of the dialation phase and you are heading into the pushing phase, you go through a period of time called Transition. Contractions sometimes come right on top of one another. You’re at your MOST miserable. You’re tired. Mentally, you’re spent.

This is when it’s not uncommon to decide you’re not going to have a baby. In labor with my oldest, I told our doula that I wasn’t going to do this any more. She encouraged me, “but, Sarah! You’re doing it!” And I didn’t have the energy to tell her, I didn’t mean physically getting a baby out of my body… I meant having a baby in a more general sense. I didn’t want to have a baby, after all. For a few insane moments, I literally had decided that I had changed my mind on the whole parenthood thing and I was ready to be finished.

Women report wanting to go home. Wanting to promise to come back tomorrow to have a baby. Wanting to be finished. Panicking. (also lovely things like vomiting, which I did with 2 of my labors, great fun.)

I was in Transplant Transition last week.

I was ready to bolt. I was panicky. I messaged Randy and told him I’d changed my mind, that we were crazy for doing this. (I was not actually serious, any more than I was serious about deciding I didn’t want to be a parent mere moments before giving birth to my first.) But think about it! Teddy’s had the best three months in his life here. It’s easy to forget in times like these what the previous 3 months were like, and what we’re trying to avoid. It’s easy to panic over whether this is the right decision.

And, just as you need support to get through transition in labor, I needed support to get through transition for transplant. I rallied that support and I think I’m past the worst of it. 🙂

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Yesterday’s appointments

Yesterday was a big day for Teddy.

We started off in ultrasound, where Teddy helped the technician remove the ultrasound wand from his belly so he could rub his fingers in the goo and then eat it. I thought his kidneys looked kind of crappy, but I’m not a great ultrasound reader.

Then we moved on to a VCUG where they strapped him into the Baby Torture Device and jammed a hose into his penis and taped it there. He wasn’t a fan. He did manage to get his arms free, as well as his legs. Houdini.

Then a quick trot down to say hi to our favorite dialysis nurses.

And a visit with the urologist. Whose resident was shocked at the length of Teddy’s record. lol. Urologist said his bladder looks great, reflux looks worse but that’s not necessarily a concern. He thought they would want to remove at least the right kidney, but it’s not up to him. Bladder looking great is what we wanted to hear!!

Last, labs. Five pokes later, we finally had ALMOST enough blood drawn, and we gave up.

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Auction, Event, Thank You!

Welcome to anyone visiting after seeing our Teddy Bear’s story on the news!

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If you are looking for information about Teddy’s auction, you can find that here on Facebook. (While you’re there, please “like” the page to follow Teddy’s journey through transplant and beyond.)

If you’re interested in our fundraising event, you may purchase tickets here, or get more information by emailing goteamteddybear@gmail.com

The event will be APRIL 20 at the Legion Hall located at 3712 2nd Ave in Des Moines. There will be live music (CW Hobbs, and maybe one other band!) and other entertainment (Ben Gran, comedian), a delicious meal, dancing (general dancing as well as swing dancing), a quick free dance lesson, and lots and lots of fun. Family friendly! Tickets are $12 for adults, $6 for children, and 5 and under attend free.

If you would like to eat at Buffalo Wild Wings and support Teddy, the dates are April 17th at the Merle Hay location, and April 24th at the Ankeny location. Tell your server you’re there for Teddy Reid and they’ll donate part of your bill.

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7 Weeks to Go: Overwhelming Anxiety

I have told myself I wouldn’t “count down” to Teddy’s transplant until we got to 6 weeks, but who am I kidding? I decided I’d do a blog post each week about one of the many varied emotions we have going into transplant.

I know people understand a transplant is a big deal, but I can still very clearly remember how I thought about transplants pre-Teddy. Even, honestly, post-Teddy, but pre-Really And Truly Going To Get A Transplant. And my conception of a transplant from our Before life is COMPLETELY different from my conception of a transplant from our Now life.

I almost don’t even have words for it. I’ve found other transplant (particularly pre-transplant) moms get this, but almost nobody else really does. I just keep saying it’s BIG. It’s big. Big Big Big Big. I don’t know why Big seems like the best word to describe it, or even what I’m describing particularly. It’s just Big. It’s so big, I almost can’t deal with it. Think of an ant who happens across an elephant, or a tiny minnow trying to take in a giant whale. “Wow,” that ant would say, “that’s BIG.”

It’s BIG.

And with that BIG comes, for me, a lot of anxiety.

My heart is pounding just typing out this post. I’m actually starting to sweat a little, and I’m on the verge of tears. That, my friends, is anxiety.

My usual response to anxiety is to obsess. I research. I ponder. I mull. I question. I learn. I think about it all the time. Transplant? Nope. My response, which is surprising me and scaring me all at once, is pretty much utter denial.

I haven’t done much research. Surprisingly, until last week, I hadn’t even researched the pros and cons of leaving in the native kidneys. I just haven’t. Transplant is so big, I don’t even know where to start. And it’s scary, and whereas I was in a frame of mind to be able to cope with scary numbers in the beginning… I’m less willing to make myself cope with scary information now.

Part of me feels like I’d be less anxious if I were asking more questions, and part of me thinks that the answers to the questions might not be that reassuring. (either because they’ll be “Scary,” or because they’ll just be not too overly informative. It’s like if you ask a sportscaster during the first week of the season if some team that’s decent but not dominating is going to make the playoffs – they can talk for an hour about all the factors that play into it, but the end result of the conversation is still going to be that there’s no good way to tell. Ok, I am terrible at sports analogies. Took me 10 years of teaching dance lessons to be able to work good sports analogies into my banter for the menfolk.)

For now, a bit of denial is working. 🙂

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First Dental Visit

Forgot to post about one of the appts I’d been dreading for, as it turned out, no good reason.

The dentist.

Teddy doesn’t like to open his mouth unless it’s his own idea. Never for tooth brushing. Never for food (obviously). Never ever. And he gags. And vomits. And siblings are encouraged to stay (UNSUPERVISED) in the waiting room. There were a million reasons I was not looking forward to Teddy’s pre-transplant dental checkup.

But it went fine. Obviously, these people are used to getting bitten, lol. It was just the standard Toddler Glance In The Mouth check.

I didn’t even get a picture.

The funniest part of the morning was the conversation with the hygenist:

“do you have any concerns about his teeth?”

“not at the moment, but I’m curious how not eating orally, vomiting 5-10 times a day, reflux, vitamin supplements and other meds, and kidney disease will affect his teeth and if there’s something I should be doing to mitigate the effects of any of that.”

“Does he eat any solids?”

“no, he does not eat orally at all.”

“Oh, one of the gals at the reception area has a 1 year old like that. He just isn’t too interested in starting solids yet.”

um… yeah. not quite the same, though, I’m willing to bet.

Then this was the fun one.

“I heard he’s going to be having some sort of surgery?”

“Yeah, he’s going to receive a kidney transplant on May 9, it’ll be his 13th surgery.”

pause.

“oh.”

Yeah. What do you say to that? I know the reception staff knows about Teddy (because I’ve had to reschedule dental appointments last minute due to admissions), but I don’t think the hygenists do. And that’s kind of a lot to take in, I guess. It’s funny because I really don’t talk to too many people about Teddy who don’t already know about him to at least some extent. I just honestly wasn’t thinking too much, and it was awkward for her, but kind of funny for me. She didn’t have much to say after that, and I felt kind of bad, but oh well. I don’t usually try to make people uncomfortable on purpose. (well, innocent bystanders, anyway. I do have a line ready for anyone who dares to comment to me on Teddy’s vomiting when we’re out and about. And God be with whomever that person is.)

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Clinic and Hematology

We had clinic and also an appointment with hematology last week. It was just an odd day. Normally I have appts in the mornings, so I get up at 4ish, pump, load up the car, wake the kids, drop off the kids, and drive out all before most people have left for work. I like that. I get done in Iowa City shortly after lunch and pick up the kids mid afternoon. Time to rest and pump and do the Diaper Bag Empty and Repack routine, meds, wash pump parts, etc. before dinner.

Wednesday, we had 1:00 and 2:00 appointments. I got home after dinner, and yet we still didn’t quite have enough time before we had to leave to get any amount of school completed. I was just off all day.

Consequently, I forgot to ask hematology a REALLY important question.

They had no concerns with his labs, and offered a few potential answers for his constantly high platelet counts. Also the added reassurance that they’d have to get a lot higher before anyone got worried about him. The main concern is that you don’t want to start clotting off in the OR while they’re hooking up your new kidney. Teddy’s Protein C and Protein S came back higher than normal (which is not a concern, from what I read online) but since it’s really important that all of this goes well, checking with hematology was a prudent step. Protein C and Protein S help tell your body when to STOP clotting. His are high, so that ends up meaning that he has more of the protein that tells your body to stop clotting. So he would tend to clot less than the average person. This ends up being a good thing.

Now what I forgot to ask about was MTHFR, which is a genetic mutation that I have that affects clotting. MTHFR tends to make you clot. But it tends to make you clot through having higher homocystine levels, and his homocystine levels are normal. So, the research I’m doing has been challenging (because, SHOCKER, not too many people are publishing research on Toddlers With MTHFR Receiving A Kidney Transplant), but ultimately seems to say that MTHFR (the A1298C mutation) would not, on its own in the absence of hyperhomocystinemia, tend to cause a problem.

However, you know, I’m limited to PubMed and a very few free access medical journals, and I’m not a hematologist. So I meant to ask. And I didn’t. So I’ve emailed and am awaiting a response.

Teddy’s NOT been tested to see if he has MTHFR. Based on my understanding of genetics, there’s a 50% chance he inherited one defective gene from me (I am heterozygous, so I only have one defective gene – Teddy could have gotten that one from me, or he could have gotten the healthy gene). I’m not 100% certain it’s relevant to his transplant. I was originally freaked out after talking to another mom whose kid lost his first kidney to MTHFR clotting, but really the research doesn’t seem to support any level of freaking out. I’m going to trust the hematologist in this.

(regardless, I’m going to have all of the kids tested at some point before too long. They need to know and I need to know. Particularly Genna, but all of them should know if they’re passing along defective genes.)

 

Clinic appointment was fine. Nutritionist we’ve been seeing was just temporary, she’ll be leaving and we’ll meet the new permanent one next time. I didn’t post about my big phone blowout with this nutritionist, but she wanted me to switch Teddy from blenderized food to a “whole foods based” formula after transplant because of the risk of food-borne illness. Let’s note that the “whole foods based” formula’s first ingredient after water is sugar. There are so many things wrong with that whole conversation, I can’t even begin to get into it.

His labs are pretty good, PTH shot up to over 1000 all of a sudden, though. And his potassium is low, so I’m actually giving him some carrots in his blend and I feel so… naughty. I told our nephrologist I could give him some avocado and she was like, “um, don’t get too crazy with the potassium.”  Funny thing is, I’ve already been cheating on the potassium as it is. I don’t do the crazy high foods, but I’ll do some of the foods on the “high potassium” foods lists. He’s always been fine.

She suggested there’s a possibility that he’s just losing his ability to hold on to potassium, and is peeing it all out, too. sigh. Nature of the beast……..

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Auction!

A friend has kindly arranged an auction online to help raise funds for Teddy’s upcoming transplant and ongoing medical expenses. If you’d like to check out what’s currently available, the auction is through Teddy’s facebook page and can be accessed here. I’m also adding a link to the sidebar here. New stuff will be added every week, so check back!

If you have something you’d like to donate, please comment here and I’ll have Abby contact you. You do not have to be local to Des Moines! Donations are tax deductible.

This fundraiser is to raise funds to benefit NFT in honor of Teddy. Thanks!!

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