Someone sent me an email, the gist of which was – I’m new to following Teddy, could you give me a summary of what’s going on with him?
I said OK, sure, I’ll put it up on the blog.
Here is a current diagnosis list
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 (we’re still uncertain what this means)
IgA deficiency (though this is on his diagnosis list, I’m not sure if it’s true.)
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 Broviac removal (infection)
3/7 Bard PowerPort placement
3/30 PowerPort replaced (malpositioned), PD Catheter replaced (malpositioned)
9/14 PD Cath replaced
10/8 PD Cath revised, tacked down. Port removed.
11/5 PD Cath replaced.
11/14 PC Cath removed
12 surgeries before he turned 1.
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)
69 days at home
He’s had three bouts with C-Diff, two IVIG infusions, some 3-4 iron infusions.
Last time I saw a number, his estimated GFR (a measure of kidney function) was 8 (that’s pretty low).
That’s it in a nutshell. Happy to answer questions.