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.

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!

Feed on the road

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.

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.

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.

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.

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.

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.

Exciting Night

Saturday evening, I was giving Teddy his last day-segment feeding at around 8 PM and folding laundry at the same time. In that process, teddy, his tubing, the laundry, and me all got tangled up and his button actually popped out of his skin. Um, oops.

So we had to run to the ER. The biggest danger is that the hole will close up. Apparently, they can close up super fast. We have a foley catheter for just this purpose – stick the foley in the hole, tape it in place, run to the ER.

They got a new one, popped it back in, and then because it was so new, they took us down to Xray to take a peek with the contrast dye to make sure it was in correctly.

Less than an hour. Feel like an idiot.

I’m also worried that I’m not venting him enough. I think we’ll pick some time when we’re going to be sitting still for a while that’s between feeds and just vent a bit. See if that helps. When he sneezes or anything, I can hear gas escaping from around the tube. (ew).

Home again, Home again

So our first night at home was a LITTLE rough. Home health met us here at about 7, when we finally got home. Brought the feeding pump, and showed me how to use it. In like 2 sentences. Didn’t tell me how to prime it, I forgot to ask. No owner’s manual.

He left, I looked thru the supplies. Missing two of them. Call. They don’t know what I’m talking about. They send something else. At 10.

Still not right. Meanwhile, I was supposed to start a feed at 8 and his overnight at 9. Called and their condescending on call nurse told me I needed to make it work for the night, and iwas like “oh my gosh, I am TRYING to make this work, but I can’t figure out the stuff I have here, it’s NOTHING like what I’m supposed to have.” She eventually, using extremely poor description skills, told me a way to use what I had to make it sort of work. Fine. And it sort of worked. But not great. PS, she should NEVER be a phone nurse, EVER. She didn’t finish half of her sentences. I hate people who trail off mid-sentence.

Also, pharmacy didn’t have the Calcitrol and gave us the wrong iron. Discovered this 2 minutes after they closed.

Argh, right?

This morning was similarly rough. I spent the entire morning on the phone. First, called Gtube nurse at UIHC to please straighten out the suppl issue. She called me back and said home health tried to tell her it was just that I needed a nurse to come show me how to use the parts. The gtube nurse told them that I knew what to do but the problem was that I didn’t have the right parts! yikes! Correct parts to be delivered this afternoon.

Then, called pharmacy. Then, called nephrology. Got iron straightened out. Pharmacy says calcitrol will be in this afternoon.

Then, called SSI. On phone for an hour. Straightened out info I’d already told them. Then, after an hour of really detailed financial information he somehow thought I’d have at my fingertips (cash value of life insurance, value of my car, etc), he tells me that the balance in our bank accounts (the FIRST thing we discussed) alone bumped us above the federal poverty line and disqualified him from SSI payments. OMG. I could have told you we’re well above the poverty line (not because of income, but because of savings), and if he knew that the FIRST thing we discussed ruled out SSI, then why, pray tell, did we bother to continue?

Then spent an hour or two washing feeding tube tubes, drawing up meds, mixing milk with protein powder, etc. for the day. Did Teddy’s first day feeding. Fixed lunch.

THEN the day got much better. Watched a movie with the kids while knitting a preemie hat for The Preemie Project, flowers delivered from Randy, coffee delivered from Betsy, and correct parts delivered from home health. Whoopie!

 

Surprise!

So we’re going home today.

His second night with the 20cc/hour overnight feed went much better, and his third night (last night) seemed to go fine, too. His labs continue to be stable – they’re not going down like they had been, but they’re not going up, either. Creatinine hovers 1.9/2.2, BUN in the upper 30′s/lower 40′s. Electrolytes generally good. The main concern, lab-wise, is his hemoglobin. It dropped to 7.5 after surgery, and is now 7.2, even after an aranesp shot.

They were planning to keep us here until Monday or Tuesday to continue to keep an eye on him, then Dr. Jetton figured, heck, why not let us go home and they’ll check back with us in a few days. He’s stable enough to go several days without being poked or prodded, and actually not being poked will probably help his hemoglobin.

So… home we go. We have to meet home health at home to get the pump for the feeding tube and learn how to use it, and then get that all set up, but I think I can do it. The G-tube nurse stopped by this morning to see if I had any questions and I really didn’t, but now that we’re leaving today and I have to do this all on my own… she’s going to squeeze in a visit between morning clinic and afternoon clinic and I’m afraid she’s giving up her lunch for us.

We will be coming back on Monday, and there’s always a possibility we will be readmitted. There’s a possibility his hemoglobin won’t come up and he’ll get a blood transfusion (outpatient). I wish I could do something for him in that area, but that one’s all on him, I’m afraid.

And there’s a possibility that things will look great and that means there’s a chance we can start going to our ped in Ankeny for weight/labs instead of driving to Iowa City every week. We shall see.