Our Teddy Bear's Journey

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

Infection…

Woke up early Sunday with a fever of around 102 F. Headed to the ER later in the morning. Five billion tests later (seriously – the list included culturing everything under the sun, a spinal tap, and Xrays), we took an ambulance to Iowa City. Once here, they put him NPO (so, no eating) until we figured out what was going on. Another eight billion tests, including more Xrays, cultures, and labs, and 15 hours later, they at least nailed down that his GI tract was fine, his Gtube was fine, and he could eat. 15 hours. Poor kid. That was one long, miserable night. He would only calm down if I held him upright while standing, bouncing, swaying, and patting. No sitting for mama. At all. All night.

There’s been some back and forth with the surgeons about the leakage from his Gtube site. They keep reporting it as a small, insignificant amount, and the nurses and I keep reporting it as enough to soak his clothes and mine, too. Maybe it’s a discrepancy between what we each feel is “significant,” but I have in general been less than impressed with the surgery team when it comes to this Gtube, both last visit and this one.

So… we were then able to rule out peritonitis or any problem with the PD catheter. Which was good.

We seem to have it nailed down to the Broviac causing a blood infection. There was some talk about pulling the Broviac, but I believe it’s been decided to leave it in place unless the gram negative rods (doctor-talk for “the bugs”) are actually “stuck” (that WAS the doctor-talk) to the line itself.

He’s been getting five or six types of really high powered antibiotics. How he doesn’t have diarrhea is beyond me, though I’ve been giving him probiotics for the last 2 weeks, maybe they’re helping. Poor kid. We’ll continue with the antibiotics for seven days after his blood clears of infection. Which it’s not yet. They won’t let us go home until those 7 days are up. At the earliest.

His anemia is much, much worse. 6.9, I believe they said his hemoglobin is, and the even worse problem is his iron stores, which are just terribly low. He was scheduled to get an iron infusion Wednesday, but that’s off the table as long as he has this infection. They could give him a transfusion, but are reluctant to do so because it introduces antibodies from a different person, and that ultimately makes it harder to get a good match for a transplant.

His BUN and creatinine were pretty high on Sunday when we came in – 70 BUN, 2.4 creatinine. (which isn’t too bad for him on the creat, but it’s higher than it’s been lately), but those can go up when you’re sick or dehydrated, so it wasn’t as concerning as it would be if it were out of the blue. The ER doctor, who I did like a lot, said several times that his kidneys were hanging on by a thread. I was like “yeah, I know!”

The good news:

– He seems to be feeling much better. His fever is gone.

– He is gaining weight. So much so that they increased his minimum intake requirements.

– He doesn’t have to start dialysis yet, and won’t as long as the BUN and creatinine go back down, and his weight continues to go up.

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The Mic-Key button

Gtube

It’s still healing and might be infected again (hence the redness), but this is his button.

 

This is what a Mic-Key looks like. The balloon at the bottom of the image is inside the stomach and is filled with saline. The port on the left side of the image is what you use to fill/empty the balloon to facilitate removal or insertion of the button.

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Pictures of my cute baby

Teddy

Teddy

Teddy

Teddy

Teddy

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What isn’t

I don’t often allow myself to indulge this line of thinking. But last week, on my second trip to Iowa City that week, I found myself thinking about what should have been.

Mid-February. I SHOULD have a 6 week old baby. I should be spending my days with homeschool and enjoying my kids. I should still be on maternity break from Wallypop. My kids should have had a fairly easy transition with a new baby, particularly with mommy and daddy there to help smooth things out. I should be nursing my baby throughout the day and delighting in his phenomenal growth from my awesome milk (just like his siblings). My afternoons should be spent playing on the Wii – an activity that was promised to Wally once the baby came, and that he has not even once complained about not getting.

And you know what I should NOT be doing?

Washing bottles, washing feeding pump parts, measuring medicines to squirt into my 10 week old’s stomach via a plastic tube. Driving to Iowa City for doctors. Leaving my kids at least once a week while I take their brother to the doctor. Watching my three year old become increasingly unable to deal with just life in general as her world has become so uncertain she can’t get her bearings. Listening to my seven year old tell me he understands why things are the way they are, but with such a sadness in his eyes that I turn away because I can’t bear to see it.

Researching, for the 40th time, prognosis statistics on infants with renal failure. Learning about the realities of our future – blood pressure medicines that cause gums to grow over baby teeth, completely nasty stomach bugs that cause diarrhea for months on end, exchanging worries about dialysis for worries about organ rejection. Calling home health, doctors offices, SSI, social workers, central line nurses, gtube nurses, and WIC.

Not even three months ago, I was still pregnant.

Such a different world I live in now.

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Technology and its awesomeness

One thing I’m completely loving about UIHC is its use of technology. For one, they use the MyChart system, which means that I can log in to Teddy’s chart online and see past and future appointments, lab results, discharge instructions, prescriptions, notes from any phone call I make to anyone at the U, etc. All in one convenient place. So super nice.

Also, I email and text with both the dialysis team, as well as our nephrologist. It doesn’t always have to be trying to catch a time of day when everyone is free for a phone conversation, and also Dr. Jetton has a preference for written communication when giving detailed information, which is fine with me because then it’s all written out. (Like if she’s decided to change his meds after we’ve left an appt, she’ll send an email so that I have it written out instead of just hearing her verbal instructions and having to take notes.)

I wish more medical institutions would get on board with this!

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Feed on the road

image

I did move him up to the front seat for our first pump feed out of the house. I think I need a shorter vent tube to accommodate the dimensions of the car, but it went well over all.

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What’s wrong

Officially:

“chronic kidney disease stage 5 secondary to reflux nephropathy/obstructive nephropathy of his left kidney (UPJ obstruction) as well as small, echogenic right kidney ”

And from his most recent admission:

“Primary Diagnosis: Failure to thrive, CKD stage 5”
“Other Pertinent Diagnoses/Problems: • Prenatal hydronephrosis • Vesico-ureteral reflux • Acute kidney injury • Premature birth • Renal dysplasia • Renal failure • Hyperkalemia • Metabolic acidosis • Anemia of chronic renal failure • Hypophosphatemia • Hyponatremia ”

Not on that list is hyperparathyriodism

This website has a good explanation of Vesicoureteral Reflux, which is where I think Teddy’s problems started. The VUR he had was caused by a genetic abnormality and resulted in severe hydronephrosis (water on kidney) in the womb.

Reflux is categorized, Grade I is very mild, Grade V is very severe. His right kidney has Grade V and his left has Grade IV.

ALL of the websites you will find about VUR or hydronephrosis emphasize that this is very mild, doesn’t affect children’s lives, and usually resolves on its own. Please note: Teddy is that one for whom it’s not mild, it does/will affect his life, and will not resolve on its own. It seemed pretty evident on prenatal ultrasounds that this was going to be the case, making all of those well-intentioned “it’s probably nothing” or “I’m sure it’ll clear up after he’s born” comments really super irritating.

Teddy’s left kidney was severely damaged by the hydronephrosis; that side also had a upj obstruction. His right kidney never developed properly to begin with.

 

 

Short Medical Dictionary:

nephropathy: damage to or disease of the kidney

echogenic: doesn’t show up like it should on ultrasound

hydronephrosis: urine stays in renal pelvis (part of the kidney) instead of being urinated out of the body.

dysplasia: abnormality of development

Hyperkalemia: abnormally high levels of potassium in the blood

Metabolic acidosis: too much acid in the body fluids

Hypophosphatemia: low level of phosphorus in the blood

Hyponatremia: not enough sodium (salt) in the body fluids outside the cells

hyperparathyriodism: overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). The parathyroid hormone regulates calcium and phosphate levels and helps to maintain these levels.

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Gtube/Feeding set up

For right now, this is what we have set up.

This is the bed where I sleep with Teddy. The pump on the IV stand sits next to the bed. We can sit in the chair together, we can lay in the bed together, or he can sit in the swing. The swing usually doesn’t go too well unless he’s good and asleep.
Gtube Setup

Gtube Setup
This is how I have the machine currently set up. It will be much easier when we don’t have to do elevated, open feeds. Right now, the milk goes in the bag at the top, then thru the tubes to the machine, which doles it out according to the settings I tell it. It comes out of the machine’s tube and actually drips into that syringe that’s in the middle of the picture (with the red hook and loop tape around the top). That syringe is affixed to a chain of plastic rings via a carabiner. I can adjust the height of the syringe by clipping the carabiner to different rings. (it needs to be 18 inches above him.) The milk then runs out of the syringe into a wider tube so it’s vented (stuff can go in and out as needed) and then into his button (the part that’s in him) via what’s called an extension set – just a tube that clicks into the button.

Gtube
This is the only picture I have of his button at the moment. I will take a better picture of this part of the system in the next few days.

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Failure to Thrive

I was reading through the notes online from Teddy’s recent hospital stay. He was officially diagnosed as Failure to Thrive. Sigh. I know it’s just part of the kidney failure, but that’s a hard one. Makes me feel like I wasn’t taking good care of my kid. Looking at him now – he looks so much better. His mouth is so much wetter, his lips fuller. He’s not throwing up as much. He keeps his medicine in. What a difference. I’m surprised I didn’t notice before how NOT good he looked. I had noted that he wasn’t eating as well (and that it was becoming a spiral – the less he ate, the less he wanted to/was able to eat), but hadn’t really noticed the drier mouth (it was never really dry, just not as wet), the kind of shrively skin.

I was telling our Nephrologist about this, and she said he had been doing fine, and the week I told them that he seemed to be doing less than fine was the week he first showed weight loss, and the week we decided to do something about it. She certainly didnt’ think I had any reason to be feeling bad about things, and I realize that I really don’t… but… *shrug* I don’t know. I still do.

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sweet boy

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