Dec 21


Teddy did his high heart rate thing 10-midnight last night. His heart rate starts to go up, then he gets agitated (or sometimes vice versa) and it goes WAAAAY up, and I think it bothers him. Certainly something stuck in one of my heart valves would make me agitated a bit, right? So we were trying to get him settled and finally did so around midnight.

At 4, the nurse needed to put in a new IV for him, because they needed to be able to start fluids in anticipation of surgery, he needed an antibiotic via IV, and they couldn’t use the Broviac because of its malposition on his heart. Putting in the IV took four tries (three blown veins) and about an hour. *yawn* 30 minutes of pumping later, I napped for another half hour and had texted Randy to call me at 6. (Yes, Randy, I did fall back asleep a bit.)

At 6:30, I woke up when they turned on the lights (ok, and when the nurse called my name) to take out the stent in his ureter. I wasn’t concerned about him, but I was really super curious about the procedure. It was literally snip, snip (the stitches holding it in place) and pull. Over in less than 2 minutes.

Then there was a lull. I “watched” the remainder of my NICU Knowledge requirements. (required videos on baby care you have to watch before you can go home. lame and intended for first time parents who don’t read and never talk to other parents.)

At 10, I learned how to change the Broviac dressing and flush it with heparin, which I will need to do every 24 hours. Also during this time, about eight other people stopped to talk to me, and I’ve quite literally forgotten who they even were or why they wanted me. I was trying to keep a sterile procedure and couldn’t get my notebook/pen. They also did rounds during this, and I missed it.

At 11, I got the stats i usually collect from our awesome nurse, Cindy. BUN up again, to 68. Creatinine 2.8. They didn’t do electrolytes. Weight unchanged.

Yesterday after they pulled his NG, they decided to stop doing the shift minimum (this was Cindy’s doing) and just see how much he ate on his own, without being forced. He ate about 10 cc’s more than what his requirement had been for 24 hours. yay.

Let’s see…


The dialysis nurse and the dialysis nutritionist stopped by to chat and answer questions and talk to me about emergency PD Catheter procedures. (what to do if the dressing comes off, what to do if there is a hole in the catheter, etc.) We will schedule weekly appointments with them back here to check weight, change dressing, and do labs. Yesterday, Dr Brophy (nephrology) had said that he thought it would be GREAT if I went back to just nursing, though I’d still need to pump a few bottles every day to give him his supplement (protein powder). He said he wasn’t concerned any more about strict input/output numbers, but would still want me to keep track of how long he nursed and how many wet diapers, and we’d measure how he was doing with weight. I clarified today that he meant we’d weigh him to see if he was growing, not weigh him before/after feedings to see how much he’d eaten. Yay.

They talked about his catheter and placement a bit, and issues like swimming, bathing, rolling over (he might not), etc. It will become less prominent over time, and should last him until transplant. (and transplant IS the goal now.)

Also confirmed that if his BUN sneaks up past 80, they’ll start dialysis right away and we will NOT be going home.

He had and failed a hearing test. (kidney issues and hearing issues often go hand in hand – they are formed at the same time – and plus I guess some of the medicine he’s been getting can also damage hearing. Um, THANKS for telling me that in advance…)

I went to lunch and while I was gone, his IV slipped out of place and out of his vein so that the IV fluid (which was turned waaaay up to make up for the fact that he hadn’t been allowed to eat since 9 am) was pumping into his tissues in his hand and arm. His arm and hand were REALLY swelled up. The nurse caught it right away and pulled the IV and replaced it (with just ONE poke) in the other arm, and then they had to give him some medicine in SIX shots that helps the fluid reabsorb instead of sitting around all puffy in his skin. Um, he didn’t like that.

Flouroscopy at 2:30. It’s like a VCUG (though when I asked the radiologist, he said it was completely different, but I think his definition of “different” and mine were, well, different). Shoot contrast dye into his nephrostomy (the drain tube he pees out of), and see where it goes.

How they hold babies still for flouroscopy. He was snug as a bug in a rug… slept thru it.

It went where it was supposed to, sort of. The kidney drained (yay) and the bladder filled. Then it immediately bounced back into the right kidney. That’s the reflux – his urine doesn’t stay in his bladder, but goes back up the ureters into the kidneys – and that’s what caused this problem in the first place. Except now they’ve fixed the problem that was preventing the left kidney from draining, so that should prevent further damage to the left kidney. The radiologist was really concerned about the reflux on the right side (which is like level five, or whatever level is the worst one) because he was worried about causing further damage to that kidney. I don’t think there’s much additional damage that could be done. It’s small and nonfunctional. (the left side still has reflux, too, but now that it also has the ability to drain, it’s not as big of a concern.) *shrug* So we walked out of there not really sure if that was a good result or a bad result.

Dr. Cooper stopped by 5 hours later and said he thought it looked GREAT! He actually was going to pull the nephrostomy right then and there, except Teddy was in surgery at that time. They will do it in the AM.

He said the biggest risk right now is actually infection. A bladder infection, because of the reflux, would be carried immediately to the kidneys. A small UTI could easily wipe out his kidney entirely, so he’s on antibiotics and will be until he either outgrows the reflux, or they repair it surgically, or he gets his transplant.

Let’s see…

I spoke with Continuity of Care nurses (two of them) at least three different times. The last time was around 3, and I literally had to have her repeat herself about three times on everything she said because we kept being interrupted, and I was having trouble keeping up with her conversation. I was so tired physically and just at my end mentally.

We made a list in the system of the nurses we have liked and so when we come back (or if we stay), now they have an official record of the nurses we have requested be on our team. Including Cindy, the day nurse we’ve had all week who I am in love with.

I had an appointment with WIC. Because he will be considered “disabled” by the SSA once they process his application, he automatically qualifies for WIC to cover the cost of his expensive supplements, because they are considered to be infant formulas. So that should be an interesting experience – yes, we are now a WIC family, at least for a while.

They had been really uncertain about whether they’d get him in for surgery on the Broviac today. 4:00 was the earliest, but probably 7 tomorrow AM. Alright, so I headed to the WIC office and I’m there for 2 minutes, and surgery called our nurse and said they would be ready for him in 20 minutes. Of course. Five minutes later they called her back and said “ok, now.” yeah, so I ditched the WIC lady (who was NOT going faster despite my telling her I would need to go in just a few minutes) and literally sprinted across the hospital.

My uncle Steve has been here with me for a few days, and he was fortunately in the room with Teddy, holding him and praying with him while I was with WIC, because that kid was just a ball of starving misery. Oh my gosh, he was so angry. So we took him down to surgery, I did NOT get to meet the anesthesiologist this time (which made me a little upset, I like meeting the person who is literally in charge of my infant’s life), and we could hear him SCREAMING long after he was out of sight. Oh, poor baby.

So… surgery went well. 2 hours. He came back awake and still pissed. Got him settled, fed a bit (10 cc, but enough to make him happy), and comfortable. Slept for 3 hours, and just woke up now as I type this at 9:30.

I know this is a long update, but even so, I don’t think I’ve been able to adequately express just how much has happened today. Not just procedures, but information, and people stopping by with bits and pieces of information to process and remember and fit together, and… I’m going to sleep.

(going home now hinges on a) him peeing out his penis after the nephrostomy is removed b) BUN staying below 80 c) recovery from surgery going well and d) nothing else NEW going wrong)


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