I’m going to have to piece some of this together from IM’s and Facebook posts, because honestly, the last week is somewhat of a mishmash of bad memories all piled together.
So… I had Theodore on Saturday, 11/26. He peed in the hospital, we were all happy. I asked the pediatrician on staff if he would please call Dr Auron, the ped nephrologist in DM. He said he didn’t think that was necessary, and based on looking at his U/S records, the right kidney had “no concerns.” So we went home super happy, on Monday.
We had a GREAT week. I mostly sat on my butt like a good little girl, knitting and nursing. I played Zelda on the Wii with Wally every day. Took some naked baby pictures. Hung out.
Friday morning, we had our consult with Dr. Auron. At 8:15,we showed up, they collected urine (just think, I felt terrible they were sticking a bag on his little wiener) and we chatted with Dr Auron a bit. He said that he suspected he had either posterior urethral valves, or reflux. Both are easily correctable, sometimes they adopt a wait-and-see approach and just monitor for a few years, but he suspected that our case would need surgery sooner rather than later since the hydronephrosis was so bad, and since his right kidney appeared to be nonfunctional. When a kid only has one kidney, they tend to want to act sooner just because it’s so important to keep that one kidney working. So, he thought probably surgery at 6 months in Iowa City. At the time, that seemed terrible.
We went to ultrasound, then blood draw, then to radiology for a VCUG. They essentially put in a catheter (which, at the time, seemed terrible) and then filled his bladder with contrast dye and took an Xray video. Kind of awesome, but I was holding his head and arms down (again, at that time, this seemed horrible) and couldn’t see the monitor from where I was.
Then we went home. Two hours later, Dr Auron himself called back. He wanted us to come right back and have another blood draw, but this time with a transport nurse doing it. (I didn’t know it at the time, but it’s apparently pretty easy to damage red blood cells when you do a blood draw, and then that can mess up some of the results – the very results that we really needed to have accurate.) He also said that his creatinine was really high, and based on that and the other blood work, and the protein and other things in his urine, he was pretty sure that his kidneys had shut down.
So that was a bad phone call.
So we packed up and left again. Sat in Path lab for an hour waiting for transport to come down. They poked his head twice and a few other places, as well, but finally got it. Then they sent us up to Dr Auron’s. He kept thinking he’d have time to stop in and talk to us between appointments, but he didn’t, and we ended up sitting around until 4:30 when the clinic closed. But the whole time, nurses kept checking on us, and I ran into Dr. Auron in the hallway once, and they all had Sympathy Face on, and we just kind of knew that things were going to be pretty sucky.
Dr Auron had us come into his closet-like office so he could show us the Xray and ultrasound pictures on his computer. I don’t remember what he said, to be honest. He teared up a little. He felt soooo bad for us. He said that he’d want to admit us to the NICU and put in a catheter, because it appeared that, in addition to the narrowing of the ureter at the exit from the left kidney and the defective valves at the entrance to the bladder, he also had a narrowing of the urethrea, and maybe that was making it hard for his kidney to drain appropriately. He hoped to put in a catheter and maybe that would be all he needed, just help peeing.
Honestly, at the time, I remember thinking that that didn’t make a whole lot of sense, but I also wasn’t in any position to ask questions. Well, I was, but all of the other alternatives were more horrible, and the catheter seemed the least terrible option, and I was willing to go with it.
So, up to the NICU (with the same transport nurse who did his blood draw). Everyone up there was so super nice. They got me some water. The transport nurse rounded up some pads for me (I didn’t have any, since I was not planning to spend the night when I left the house that morning). And they spent the next several hours doing terrible things to my poor kid who was STARVING and then told me that he couldn’t have breastmilk. Sigh.
I spent those hours with my finger in his mouth, stroking his head and shielding his eyes from the bright lights while they put in a few IVs, did more blood draws, and tried several times to put in a catheter. When they couldn’t get it in, Dr Auron decided that he needed to go to Iowa City. I don’t actually recall anyone telling us this directly, only overhearing the nurses talking about it. Someone gave me papers to sign.
I’d been resisting a pacifier, but they had just told me he couldn’t nurse, and he was going to be in an isolette for the 2 hours to Iowa City, so I ended up deciding it would be OK, because I didn’t want him to be upset during the ride.
So, there went two of my sacred cows… breastfeeding and pacifiers. And, cosleeping, at least for a while.
Randy went home to pack. He told his parents he needed them to come to our house and drive him to Iowa City. (I told him not to drive himself.) He finally got on the road about the time I was arriving in Iowa City in the ambulence. Theodore slept the whole time.
Once we arrived in the NICU, there were approx 3,000 people in his room. I sort of got the impression that they wanted me to just step aside and wait, but after a quick trip to the bathroom, I squeezed in and resumed the head rubbing that ended up becoming my main way of providing comfort over the course of the next week. I don’t remember what all they did to him. Labs, and monitors. Someone tried and failed to get in a catheter. Then Dr Cooper from urology (who I do like, but is also kind of on my shit list) retracted his foreskin. Sigh. It was over before I knew he was doing it, and while I understand why he did it, I think the least he could have done was SAY SOMETHING ABOUT IT. Then we would have had to have a conversation about it, which is probably what he was trying to avoid. He actually said “trust me, some day you’ll thank me for that” to Theodore. I wanted to say, “I’m sorry, really? You’re a UROLOGIST. Surely you know that it’s a rare male who has a foreskin that doesn’t retract on its own before he reaches adulthood. How is it possible that I know more about foreskin than the head of ped urology at UIHC?” But I was really too tired and upset to work up much more than a few head nods. It was 11 or so, I think. My phone apparently doesn’t keep that many text messages, so I can’t look it up.
Eventually, they did get the catheter in (had to use some other type of tube – a feeding tube, maybe?) and a whole mess of people – some of whom had been woken up at home to come in and see him – had different things to say to me, none of which I recall. At some point, Randy got there and hung out with me for a half hour or so, then they all found a hotel. Genna woke up once they arrived around midnight, and didn’t go back to sleep for a few hours. I ended up going out to get dinner at about 2:30 am. Surprisingly, the fried cheese balls under the heat lamps in the overnight cafeteria were delicious, but I only ate about half of them.
Nearly throwing up whatever I was eating became somewhat of a theme for the next 4-5 days.
I eventually fell asleep in the NICU room.
Also, ultimately, I’ve heard that they suspect his right kidney was fine, but the reflux on that side is much worse than the reflux on the left, and they think that it might have just been completely destroyed in utero by the reflux. Among the things I think people need to explain to me, I think someone needs to explain to me how at 33 weeks, Dr Drake still saw a perfectly healthy, appropriately sized right kidney, but at 34 weeks, Dr Mandsager could not see a right kidney at all. That one is a mystery to me. Ultimately, no, it doesn’t matter, but I want to know anyway.
Last, I’ve noticed something about docs here in the NICU. They make the decisions. Parents are told after the fact. That is not how I am accustomed to doing business, and ultimately, they are going to have to realize that. They are not in charge. I am still in charge here.