Attention Coworkers

Not mine, obviously.

I don’t like to dwell on this much, and we never talk about it. However. “It can be expected that, during childhood, approximately one third of infants with ESRF will die”  http://www.pdiconnect.com/content/27/Supplement_2/S180.full

This is despite dialysis, transplant, or treatment.

Can you imagine that?

Now, do you think you can cut our family a little slack? Thanks.

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The Gtube

Looking at site stats, a goodly number of people end up here searching for info about Gtubes.

So let’s discuss.

The Gtube is essentially a hole that leads from the outside of Teddy’s tummy into the inside of his stomach. The hole is filled by a silicone device that allows us to put food and medicine directly into his stomach instead of through his mouth.

Teddy CAN eat. He doesn’t have any physical problem with eating. Kidney disease does make you less likely to WANT to eat, and I think his prematurity plays a role here, too – he just still doesn’t have particularly strong oral muscles and he doesn’t eat enthusiastically, vigorously, or for very long.

He wasn’t growing and it was a daily struggle to feed him enough food. Our days revolved around getting the baby to eat. I wasn’t enjoying my kid, because I was too busy worrying about how I was going to get him to eat.

I honestly didn’t resist the Gtube much. I know a lot of parents struggle with this decision, which is, I suspect, why people are out searching for information and landing here. I had already read several research studies on nutrition in infants and children with renal failure that all suggested that a feeding tube was nearly universally needed in these kids. After our nephrologist suggested we might consider one, I asked a few online friends of kidney babies about their experiences and each one said that they didn’t regret it, and they wished they’d gotten it sooner. Honestly, these two things made my decision so much easier, and I consented to the surgery a few days later.

I love it. I’ve joked several times that I could practically write love sonnets about the thing. I have never once had negative feelings about his tube. Not once. I do not regret getting it. It’s not necessarily easy. It’s kind of a hassle. It is just one more thing to deal with. But… it keeps him alive.

Because of his G-tube:

– He doesn’t have to taste the numerous nasty medicine he takes twice daily.

– We don’t have unpleasantness over medicines.

– I don’t have to spend the whole day trying to force him to eat.

– He can enjoy eating. For a kid who seems medically destined to have issues with eating (from the kidney disease), the Gtube is allowing him, for right now, to still see eating as a pleasurable activity. He eats what he wants, when he wants. If he doesn’t feel like eating, he’s tired, he’s nauseous, etc., then his food goes thru the tube.

– He can stay hydrated when he’s ill.

Don’t get me wrong. A Gtube is a last resort. Try everything else first. But if everything else isn’t working… a Gtube can be a wonderful thing. 🙂   (for more info, check out Feeding Tube Awareness’s website.)

Room tour #2

 

This is the inside of the closet. No clothes. On the right is this shelf, and straight in and on the left is mostly empty, planning to store boxes of dialysis supplies there. (Same with under the bed.)

Tour3

Tour4

I have to explain “procedure table.” It’s obviously a TV Tray. But it works.

Schedule

I have designated Friday as Supplies Day. Fridays, I check my stock of Tegaderms and other PD Cath dressing supplies. I check my feeding tube extension inventory. Syringes. And, of course, drugs.

(Let me interrupt to say that today, Wally said to me, “I thought drugs were just for grownups.” Note to self: work on synonyms, review Just Say No concept.)

Three of Teddy’s Rx expire every 14 days. This last hospital stay, I was finally able to get them on the same schedule. Yay!  One of them expires monthly. Then the other four are dispensed in commercial bottles, and they expire at random.

On my calendar, I have an appointment to call the pharmacy every other week to refill the four Rx that expire. The other four, I do some rough calculations to determine when I will need a refill, and then add that Rx to my calendar, as well.  Since the amount he takes changes frequently, my estimate isn’t always right. So each Friday, I take stock and make sure I have enough for the upcoming week.

I also have an appointment in my calendar every four weeks to call home health for another box of feeding pump bags – there are 30 per box, and I aim to refill when I have 8-10 remaining.

And, at Friday’s dressing change, I make note of my level of supplies for PD Cath items and shoot our nurse an email if I will need more of something when I see them.

Having it in the calendar helps me to not forget. And, of course, I like having things on a predictable schedule – it keeps me organized!

Room Tour #1

As we settled in here at home, during those wild and crazy three months between admits, I slowly have been making changes to the room that used to be Wally’s room, but is now about 50% Teddy’s stuff, 30% older kids’ stuff, and 20% my stuff. I try to always keep dialysis needs in the back of my head while moving things around in here. I didn’t photograph the four dressers lining the walls (Wally’s, Genna’s, Teddy’s clothes and stuff, Teddy’s diapers), or the other set of shelves (part toys, part baby stuff), or the shoe shelf, or the TV (38 inch, I think? Big enough that I can see it reasonably decent without glasses during middle of the night pumping sessions).

Tour1

So here we have my newest addition – shelves and a fridge. He has enough fridge meds now that it’s easier to have them all together here, and it’s easier to keep the milk in here, too. On top of the fridge, in the box labeled Box F is currently some misc stuff from Home Health that I need to keep handy for when the nurse comes. Normally, my travel cooler lives there. Box G is dirty bottles and syringes, in the wash tub and with the rinse tub underneath. On the top shelf next to the fridge is the drying rack for bottles, and the box labeled Box E contains nipples and bottle lids of all types.

Box A is misc. daily use items – blood pressure cuff, stethoscope, BP log, thermometer, scissors, nonsterile gauze. Box B is current day’s meds as well as Gtube extensions and feeding syringes. Box C is all of the meds plus clean syringes. Box D is empty bottles for the breastpump.

The Misc shelf currently holds IV infusion supplies.

Tour2

The pumping station. Comfy chair. Remotes. Shelf with water, phones, books, knitting, and also a jar of peanuts. 🙂

(Before you start judging on the TV… first ask yourself if you’ve ever exclusively pumped for any baby, ever, particularly at least twice during the middle of the night. No? Didn’t think so.)