Our Teddy Bear's Journey

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

Teddy’s Brief History

Our Teddy was born via induced (but otherwise natural – go mama!) labor at 38 weeks gestation due to extremely low amniotic fluid. We knew he had severe hydronephrosis in one kidney, and there were conflicting reports about the other kidney: it was just fine, it was missing, it was small, it had no blood flow, it looked good, who knows. When he peed after birth, the attending pediatrician assumed things were fine and we didn’t push it.

At 6 days, we had a scheduled consult with a ped nephrologist and discovered that Teddy was in kidney failure, his right kidney was small and nonfunctional, and his left kidney was barely functioning, if at all. We were transferred to the UI Hospital in Iowa City via ambulance and stayed there for three weeks getting him stabilized.

Since then, he’s had a rough journey.

Teddy received his kidney transplant from a wonderfully awesome living donor on July 18, 2013. ๐Ÿ™‚ It’s still a bit early to tell, but things seem to be going well. We’ve had a few bumps in the road, but overall things are good – that new kidney is working like a champ!!

Here is his current diagnosis list:

Weight loss (yep)Low bicarbonate level
Kidney replaced by transplant
Long-term use of immunosuppressant medication
Immunosuppression for prevention of kidney transplant rejection
Kidney transplant status, living unrelated donor
MCAD (medium chain acyl-CoA dehydrogenase deficiency)
Elevated liver enzymes (cause still undetermined)
Hyperparathyroidism (this is resolving with the transplant)
Secondary thrombocytosis (from the anemia, his body makes far too many platelets)
Coagulation test abnormality
IgA deficiency (his immune system has been poor since birth)
Hearing Loss (resolved with tubes)
Hypertension (from the kidney failure)
Hyopgammaglobulinemia, congenital (immune system not up to snuff)
Feeding by G-tube
Anemia of Chronic Renal Failure
Congenital Renal Dysplasia (shitty kidneys)

This was his diagnosis list before his transplant:

Vesicoureteric reflux (urine flows back from his bladder to his kidneys, VUR) (Teddy has stage 4 reflux on one side, and 5 on the other. That’s the worst it can be, and then one step down from the worst. His ureters are large and twisty, rather than narrow and straight. Technically, it’s called hydroureter.)
Reflux nephropathy (kidneys damaged from the VUR)
UPJ obstruction (the kidney that isn’t too small had an obstruction at its outlet, which was fixed with T’s first surgery when he was 8 days old.)
Congenital renal dysplasia (one kidney is small and underdeveloped)
Chronic Kidney Disease, Stage V (this is the big “what’s wrong.” Everything else is either what caused this or what is caused by this. This is also known as kidney failure)
Premature Birth (36 weeks, induced for lack of fluid)
Anemia of chronic kidney failure (his kidneys don’t make the hormone that tells your body to make red blood cells)
Feeding by G-Tube (he is 100% tube fed)
Low Gammaglobulin Level (his immune system is naturally not quite up to snuff.)
IgA deficiency (More immune system stuff.)
High Blood Pressure (kidneys regulate blood pressure, and T was diagnosed with hypertension when he was something like 6 months old)
Hearing Loss (this has been resolved with the tubes)
Vomiting (ha ha ha)
All sorts of hyper- and hypo- things from his labs. (phosphate, calcium, etc)

Here are the surgeries he’s had

12/4/11 Left dismembered pyeloplasty with placement of percutaneous nephrostomy tube and circumcision.

12/7/11 Broviac placement; PD catheter placement
12/21/11 Broviac replacement (malpositioned)
2/2/12 G-tube placement, open procedure, Mic-key button
3/2/12 Broviac removal (infection)
3/7/12 Bard PowerPort placement
3/30/12 PowerPort replaced (malpositioned), PD Catheter replaced (malpositioned)
8/10/12 Tubes
9/14/12 PD Cath replaced
10/8/12 PD Cath revised, tacked down. Port removed.
11/5/12 PD Cath replaced.
11/14/12 PC Cath removed

12 surgeries before he turned 1.

(5/31, liver biopsy – a procedure, not a surgery)
7/18/13 Bilateral nephrectomy, renal transplant
8/15/13 Stent removal

Hospital Admissions:

11/26-11/29: birth (4)
3 days at home
12/2-12/23: NICU (22 days)
40 days at home
2/1-2/9: Gtube (9 days)
16 days at home
2/26-3/9: Broviac infection (13)
16 days at home
3/26-4/6: dehydration (12)
95 days at home
7/11-7/17: line infection (enterococcus) (7)
25 days at home
8/12-8/13: pre-surg, cancelled for cdiff (2)
22 days at home
9/5-9/18: line infection (enterococcus and ascintobacter), PD cath replacement (14)
13 days at home
10/2-10/13: line infection (ascintobacter), port removal, PD cath replacement (12)
19 days at home
11/3-11/15: dehydration, then catheter replacement, then fungal peritonitis (Candida Parapsilosis), then cath removal. (13)
174 days at home
5/9/13: Transplant, cancelled. (1)
20 days at home
5/30-6/1: Liver Biopsy (3)
44 days at home
7/17-8/5: Kidney Transplant (20)
36 days at home
9/11-9/12: Diarrhea (2)
4 days at home
9/17-9/24: Diarrhea, low bicarb, switching meds (8)

He’s had three bouts with C-Diff, two IVIG infusions, some 3-4 iron infusions.

Before his transplant, his estimated GFR (a measure of kidney function) was 5-7 (that’s pretty low). (Technically, that’s incompatible with life.)

That’s it in a nutshell. Happy to answer questions.


One response to “Teddy’s Brief History

  1. Jessica Gold says:

    I came across your blog when I was searching the internet dor GKTW details. My daughter is being granted a wish in October (she doesn’t know). She too is a transplant recipient, a liver.

    Your Teddy seems like a trooper! Tough and smart!

    Thank you for sharing his story ๐Ÿ™‚

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