Our Teddy Bear's Journey

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

What’s Going On

We’re not having any sort of crisis! That’s what’s going on! I’ve been able to get in about 4 weeks of school IN A ROW. (a record for us for 3rd grade, whoo hoo.) I’ve been able to work a little. I got out a wholesale order that was placed in June! I’m going to re-open Wallypop next week.

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Transplant Team… and if you’d like to be considered as a donor

So… today was our big day meeting the transplant team.

We started with the transplant coordinator doing some basic transplant education, which wasn’t really anything I didn’t already know, and I think the same goes for Randy.

Labs, Xray (seriously, glow in the dark kid, right here) – it was all new Xray people this time and one asked if he’d ever had an xray before. hahahahaha.

Then we met one of the transplant surgeons. Liked him. As always seems to be the case with surgeons, he had a completely different version of reality than anyone else. And I think our experiences with Pitcher might have soured me a wee bit on surgeons, but I’m sure they’re fine.

Then he had an EKG.

Then we talked with Dr. Brophy (head of peds nephrology and transplant, who we’ve known since just over a year ago) a bit.

Then we met with the social worker.*

 

Things we learned:

They plan (at least at this time) to remove his native kidneys and ureters (called a nephrectomy) at the time of transplant. Otherwise, they’ll probably just muck things up. I was really happy to hear this. His native ureters are REALLY screwed up and I was kind of sweating the whole “are we going to have to repair those first and how” thing. Evidently, when you have high output like Teddy does, the native kidneys can just confuse everything and it’s just simpler in the long run to take them out. (And a good friend online’s kid, who is very similar to Teddy but just older, had his native kidneys left in and has had to have them removed after transplant and it’s been kind of a hassle… and I’d rather avoid that.) We were told originally that they’d probably be left in (I mean, like, a year ago).

They don’t use a steroid protocol, generally speaking. He’ll be on prednisone in the hospital, but will wean off before discharge. yay. That was another big thing that made me happy. A toddler on steroids just doesn’t sound like fun. In addition, I was on prednisone as a teenager and wouldn’t really wish it on anyone. So, yay.

I’m going to take the list of medicines he’ll be on to our pharmacist and get her started on determining if we need a prior authorization for any of them so we can get that started if needed.

He’s got a boatload more labs that need to be done, but since we want to leave enough blood in him to let him continue to live, we’re spreading them out over several lab visits. I’m going to start stacking on one or two to our every other week (is that biweekly? or semi weekly?) local labs visits, and we’ll do one or two when we’re in Iowa City each time, too. And they’re going to send us a tissue typing “box” from the VA (yeah, I’m not sure) to take to the local lab, as well.

The transplant team meets every Monday to discuss things. They’ll discuss each of the “in the works” patients and each person gets to say their piece – absolutely not, definitely yes, or “I want him to do x test before I comment” type of stuff. The sucky thing is that, because of holidays, they might not meet again until January, the lazy bums. I mean, ultimately, I don’t think this is necessarily a HUGE deal, because he still has to grow more, so it’s not like we’re just waiting on them at this point. We’ve got some time. He’s gotten more stable.** But, still, it would set my heart at ease to hear “everyone said Yes and he’s good to go.”

 

We also have donor packets. If you are wanting to be tested as a potential donor, please let me know. You must be blood type O, and you need to know this first. If you have type O, I’d suggest you read this. Think about it long and hard. I absolutely DO NOT expect anyone to give him a kidney. Seriously. I’ll still love you. Randy and I each have reasons we’ll probably be ruled out as potential donors, but are going to proceed with matching for the time being. I’m just not placing my hopes there. So, anyway, I have a few packets for potential donors. You start by filling out a form with your health history and then if you pass that hurdle, they do some tissue matching, then if you pass that hurdle, there’s a crapton of OTHER tests, mostly to make sure that donating won’t be harmful to YOUR health. Before you even put pen to paper on the health form, you can’t be obese, you can’t be on BP meds, you need to be in generally good health, you can’t be diabetic.

 

** (yes, convention would be to put the single * first, but I think this one is more interesting)  At our local labs 2 weeks ago, Teddy’s BUN was REALLY high. 80s ish. And that’s bad. I mean, there’s a cutoff point after which the high BUN can start causing damage (around 100).  We cut out his extra protein and hoped he’d keep growing. (BUN is a byproduct of protein breakdown) And then he didn’t grow a single tenth of a kilogram for 6 days and I was sweating bullets over it, so I started giving him about a T of coconut oil every day. And kaboom, he started growing again, so that made me happy. And his labs on Friday were EXCELLENT. Mostly everything is starting to settle down again to where we like it.

*The social worker (our THIRD social worker this year) was really nice, but kind of expected a soul-bearing conversation when we had literally just met. Hi, sorry, you have to read my blog to get that. lol. That’s sort of true, though. I’m just not going to spill my worries and concerns and “things that are so difficult to discuss that we often just don’t mention them, like death” with a total stranger. (yes, evidently, countless strangers – I say countless only because I actually haven’t checked my stats on this blog in the last 6 monthsish – on this blog is totally ok, though.) When we told her that I cope with stress by, among other things, doing a lot of research, she suggested it was because women tend to feel that if we learn a lot about something we can prevent bad things from happening. Um, ok, well, not so much…  I like to avoid surprises, I like to have time to think things through in advance if possible, and I also keep up on current research so that I can be an active and contributing member of our health care team. I don’t think that education is a form of voodoo. But whatever. She was generally very nice and I anticipate not finding her to be irritating. She just needs to avoid recommending that I do yoga or participate in other bizarre forms of squeezing more than 24 hours worth of work into a 24 hour day and we’ll get along just fine. 🙂

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Miss you, Dad

13 years ago today, my dad died from liver cancer. Miss you every day, dad.

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This is a terrible picture, from about 1997, I think. I got some sort of award from the Governor (Branstad, the first time) and this picture was taken at the Capitol.

He would have made such a great grandpa – he loved kids! I’ve thought often over the last year what a blessing it would have been to have him with us on this journey.

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Here he is shortly before he died, holding my nephew Will.

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Dec 7

Surgery to put in his first dialysis catheter and his first Broviac line. Sigh. This will probably be the last of the naval-gazing Review Of What Happened Last Year posts.

Headed to Second Surgery
Post Surgery
PD Catheter

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December 6

December 6

The day everyone gave up. This was probably my lowest day since the ambulance ride on the 2nd.

The nephrology team didn’t come visit us at the time they usually do. The nurse stopped by several times to tell us they were still in the conference room talking. We became convinced they were talking about us, and that they weren’t saying “hey, those labs look great, I think this is going to work out, let’s send them home!”

Yeah, they weren’t.

This was the day the came to tell us…

Well, that’s the funny thing. I don’t remember. I remember Dr. Jetton coming to talk to us, and the other people were there. And she talked for a bit. And she asked if we had questions. “You must have questions,” actually. And we both just sat there and stared at the floor and said nothing. I had no questions. Honestly. None. What does one ask when one has just been told their newborn needs dialysis and a kidney transplant? Even though we knew that this was probably where we were headed – had known this since about 30 weeks into the pregnancy – we had still held on to the hope that things would turn out Ok after all.

This was the day we had to face up to the fact that things weren’t going to go back to normal.

From my blog of that day. “I seriously don’t get it, God. He’s just a Baby.”

And I still don’t. I still don’t get it. I still struggle with this. I know my vision is limited and I know I only see the small picture, but the small picture I see absolutely blows. The small picture I see is a baby who suffers and two big kids who suffer in a different way. I see no good from this that couldn’t be accomplished a different way.

Someone said to me once that if just one person were saved by watching our family deal with this, by seeing Teddy’s struggle and our family’s faith, then it would all be worth it. Maybe I’m going to hell for this thought, but I’m not sure. Jesus suffered for our sins. My son should not have to.

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A year ago today

Yeah, there might be a few of these types of posts. This week is a strange mix of anxiety about how he’s doing now, sadness over how rough the last year has been on everyone, joy at how far we’ve come and that he’s still here, and grief over the still fresh memories of the days surrounding his birth, diagnosis, and the start of our NICU stay.

One year ago today, December 4, was a Sunday. The urologist decided to do Teddy’s surgery, originally scheduled for Monday, on Sunday instead. That probably meant it was more serious than anyone let on, thinking back, though that didn’t occur to us at that time. They fixed his UPJ obstruction (narrowing at the ureter exit just below his left kidney) so that that kidney could drain.

The hope was that the kidney would drain, and it would start to work like a normal kidney, and we could go home and have a happy life with just the one kidney.

The urologist had us pretty convinced.

Because we still hadn’t learned rule #1. Don’t believe the good news. Sounds awfully jaded, but it’s really the only way to do this Medical Needs Parenting business. Don’t totally let go of hope, but don’t believe the good news.

So, we kissed our big kids goodbye that afternoon – for the first time, ever. (yes, at 7 and 3, we still hadn’t spent a night away from our kids – none of us had ever really wanted to sleep apart.) And then later that evening, we kissed our itty bitty goodbye and handed him over to the nice German anesthesiologist and told him to take good care of our Teddy bear.

And as I wrote at the time, it wasn’t that hard. I mean, yes. It was hard. God, it was hard. The 11 times since then have been hard, too, and I’ve cried every single time, and I”m crying now just thinking about it. But we knew it had to be done, and that made it a lot easier.

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Dear Self

If I could send myself a letter from me today to me 1 year ago…

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(Friday, Dec 2, 2011)

Dear Sarah,

Rough day, huh?

Yeah.

But you know what? It’s going to be OK. It’s going to be scary, and it’s going to get scarier, and it’s going to be tough – tougher than you can actually imagine right now, if you can believe that. It’s going to be a different OK than you are capable of imagining today. But it is going to be OK. But you know that. You’ve known that all along. God’s got this one – the hard part is letting Him.

You’re going to make good decisions. You’re not going to screw him up. Your instincts might not always be right, but they’ll be right often enough.

And here’s some advice:
– Never leave the house without knitting and a phone charger. (but by this time last year, you’d already learned that lesson, hadn’t you?)
– Don’t believe the good news. Most of it doesn’t work out and it just hurts more when you’ve let yourself believe it.
– The nurses are OK. Stay on your toes, but they’re ok.
– Keep trying on the nursing, but don’t beat yourself up about it. He’ll eventually stop eating by mouth entirely, and you’ll end up surprisingly happy about this, so don’t sweat it.
– Request Dr. Shylansky for surgeries whenever possible. Just trust me on this one.
– Ask for and accept the help others want to give.

This blog post inspired by this video on YouTube, which is a collection of advice that parents of children with disabilities would have given themselves on the day of their child’s diagnosis.

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It’s complicated? Not for me.

I recently discovered that a fellow kidney mom named Julia Roberts blogs, not only at her own blog, but at a place called Support for Special Needs.  This recent blog post (by a different author) has made me do some thinking. The author ponders the many ways that parents react to the special needs of their little ones.  “Some parents accept their children’s disability as an integral part of who they are, even if it threatens their lives. Others hope for a cure that will give their children a shot at a typical life, regardless of the danger or the lethality of those children’s disabilities.”  The answer to the “cure” question is, he says, complicated.

Well, OK, if I’m going to be honest, this blog post did NOT cause me to do much thinking. Because it took about .2 seconds for me to answer – YES! Yes, yes, a thousand times yes. In a heartbeat, yes.

If Teddy’s problem were one that was more intimately tied into his personality – Asperger’s or Intellectual disabilities – perhaps my answer would be different. I can even see my answer being different if Teddy’s issues were more systemic, or if they were more along the lines of Challenging-But-Not-Life-Threatening.

But, yes, I would cure my Teddy Bear without giving it another single thought. I’m certain that Teddy would still be my sweet teddy bear even if he had fully functional kidneys.

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This Week at the Clinic

Well, I learned a valuable lesson: EMLA is a terrible idea for Teddy. It’s been a long time since we’ve tried it, so I decided to give it a shot. I almost asked if they could put it on just one arm and leg and leave the other, but I didn’t, and I should have. EMLA is a numbing cream, but it’s also a vasoconstrictor, so it makes your veins shrink up. Three terrible pokes later, we finally got labs.

Labs were ok. His BUN and Creatinine are higher, I think, than at any other time without him having something terribly wrong with him. (His BUN has been in the 90s before, but he was vomiting almost uncontrollably.) (BUN 79, Cr 3.0) Some of his other labs were just off – things that have never been issues before, like phosphorus and calcium, anion gap. Nephrologist suggested it’s just his kidney losing a bit of function. Though I think “just” is somewhat of an understatement, considering how badly we need that kidney to hang in there.

That’s about it. It was uneventful. He gained weight well, and seems to be doing OK, other than his labs kind of falling apart.

I don’t know how the rest of the team is feeling about how things are going, but I am feeling extremely nervous. I’ve almost resigned myself to a future of living in Iowa City with three kids and having to find a nanny.

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