Not a Great Clinic Visit

So, yesterday’s clinic visit wasn’t super great.

He failed his hearing test. (6th one) He passed in one ear, failed the other. Plan is to retest again in another month, because the next step in diagnosing what might be wrong involves being under a general anesthesia and I’d like to avoid that if possible.

Labs went OK. She was able to get it with just one poke, but she nearly gave up. The phlebotomist didn’t personally feel comfortable saying that she thought the Broviac was ready to come out (because the draw was still pretty hard), but the dialysis nurses were more positive about taking it out. I’ll admit, I was still pretty on the fence. Everyone asked me what I thought, including Dr. Jetton, who also asked last week, which I really really appreciate.

Weight was good, up about 20 g. Nutritionist came in to chat, she was good with leaving things as they are. She’s pretty down on natural medicine, though.

Dressing change went good. They showed me how to do it at home now. We’ll do it 3 times a week, just like the Broviac. Loaded me up with medical supplies.

Then labs came back. The CBC comes back first, always, and showed that his hemoglobin was up over 10, which was AWESOME because it meant no Aranesp shot.

Then the rest. Creatinine up, BUN way up, potassium up above normal range, several other things outside of normal ranges. So, Dr. Jetton ended up saying that the Broviac was definitely not coming out, because she thought chances were pretty good that we’ll be admitted next week to start dialysis.

Sigh.

But, you know, Teddy’s always done better than they’ve expected. If things look better, or even just hold steady, they’ll let us go home next week. I think that is their preference (not just to be nice to us, but looking at their own staffing needs – they’ve got several kids starting dialysis next week already).

Dr. Brophy, on the day we were discharged from the NICU, said he thought we’d be back in less than a month. Well, it’s been more than a month, so at least there’s that.

We did learn that the other baby who had been in the NICU with kidney failure was able to go home without a catheter, even. đŸ™‚

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New Plans

Just got off the phone with Teddy’s doctor.

Next week will be six weeks since his PD Catheter was installed, and at that point it is considered healed (or healed well enough anyway) that it doesn’t need to be sterile. I can start doing his dressing changes at home, and we won’t need to be back in weekly.

Originally, they were thinking that we’d need to, at that point, have a home health nurse come to do weekly labs, but now, since he’s been so stable, they’re thinking we can get away with NOT doing labs weekly. Wahoo.

Then, because he won’t be having blood draws as often, they’re thinking that his Broviac can come out. It’s an infection risk, and if it doesn’t need to be in, it’s better out. That means all labs come from his veins, which I’m not super enthused about, but we’re also not doing labs every week (or twice daily, lol) any more. So we’re going to try doing labs via a vein next week and see how it goes, and we have an appt with peds surgery to discuss, and we’ll decide. It would be another surgery, but outpatient.

I am going to ask about what will happen when he starts dialysis – if he has to go back to twice daily labs while we’re inpatient, is it worth keeping that line in for that?

Purpose of this blog

My goal here with this blog is not necessarily to keep people informed of Teddy’s progress, though that is definitely an element. The real purpose here is twofold: to record, for my own purposes, the story of Teddy’s journey; and to provide support for other families going through the same thing. That’s why I spend so much time blathering on about  my feelings, and what’s hard, and our experience, beyond just the facts of Teddy’s condition, prognosis, and care.

Clinic Visit

Yesterday’s clinic visit went great! Teddy gained weight (yay) 3.26 kilograms.

His labs looked good again, and creatinine came down .2, so yay. We made some adjustments to his meds and that was it. All that worry for nothing. He’s doing better than anyone expected.

So, Dr Jetton said that she would hate for me to lose out on the ability to nurse him, so we’re going to try to find a place where we can keep him gaining weight but I can keep nursing him. To that end, I’m going to hire an LC to stop over and help us out.

We’re back next week, and they’re going to try to draw labs out of his veins and see how that goes. If they can get his blood drawn that way, they might go ahead and schedule surgery to remove his Broviac. It’s an infection risk that I guess they’d rather have out than keep using. Personally, I’d rather keep it in and save him so many pokes, but will admit that the idea of a tube in my kid’s heart thru his jugular, which I am responsible for maintaining, does make me a tad nervous when I think about it too much. We’ll see.

Anxious for tomorrow

I have been weighing Teddy at home on a borrowed baby scale. Though it doesn’t necessarily correlate to the hospital scale, it provides a good look at what’s going on with him by comparing his weights on THAT scale. (so, I don’t compare his weight at home with his hospital scale weight, but comparing two weights on the home scale is useful.) By that measure, he hasn’t gained this week at all. He hasn’t lost, but he hasn’t gained.

(Keeping in mind that I did NOT weigh him until Saturday of this week, so if he gained between our Weds clinic appt and Saturday, I did not capture it.)

So I’m worried about what they’re going to want to do. I’m having a hard time with the concept that my breastmilk isn’t enough for him. I know it’s not my milk – I certainly grew two other healthy babies on it – but it’s the kidneys that make it hard for him to grow without a special diet. But, still. Out of all the “things,” this is one of the biggies for me. It’s one of the ways I identify myself. I am Sarah, breastfeeding mommy. And while I know that adding formula to my milk and feeding him via bottle doesn’t make me less of a breastfeeding mommy… it feels like it does.

Yes, it’s a matter of pride. It hurts my self-esteem. I’m not too proud to admit that this is really the problem here.

So, back to tomorrow. If he’s not growing, the options will be supplementing (or going completely to formula, which I will fight), or starting dialysis. I’m more afraid of the latter option, and am trying to keep that perspective. Formula – it’s better than dialysis. (hey, Similac – got a new slogan for ya!)

nursing

This week’s clinic visit

Well, this week, Teddy’s clinic visit went ok. Last week, his hemoglobin was 7.7, so they gave him an aranesp shot to help stimulate red blood cell production. (kidneys usually produce a hormone that does this.) This week, it had come up somewhat, to 8.1. They gave him another aranesp shot.

His BUN and Creatinine continue to sneak down, ever so slowly. Actually, creatinine stayed the same, but BUN came down a smidge. (BUN 55, creatinine 2.4). His electrolytes were all more or less in acceptable ranges.

The big problem was his weight. He didn’t gain hardly anything between last week and this week, which made the nephrologist nervous about needing to start dialysis, and the nutritionist nervous about his diet. However, last week, I had moved him to all breast/no bottles (of breastmilk). He just doesn’t have the stamina to nurse for long enough each session, and I had been concerned about it all week. I asked if we couldn’t just wait a week before taking any drastic measures, and I would go back to bottles of pumped milk, to make sure he’s getting enough. Nursing is work, the bottles are fast flow, so they require basically no work.

I’m pretty discouraged about that. Everyone keeps telling me that actually breastfeeding him isn’t important, blah blah blah. And yeah, I suppose. But this is important to me, even if it isn’t to anyone else. Not just because exclusive pumping means that approx. 1 hour out of every two is spent pumping, feeding, and washing bottles. Not just because it means that I have to get up out of bed and fully awaken every 2-3 hours overnight and spend that hour pumping, feeding, and taking care of bottles. But because, dammit, I want ONE THING that I want.