The past couple of weeks have been… OY VEY.
Just a quick summary:
– As you know, we spent Leah’s 11-monthiversary in urgent care and the ER. Good times. The general consensus was that she had a bit of atelectasis (lung not opening all the way) following her April 3 procedure.
– At Leah’s last dilation, on April 17, the doctor was pleased to report that her esophagus was a tiny bit more open than usual. He was able to pass the scope through the stricture prior to dilating, and estimated that it was at about 5mm, which is better than the 2-3mm it had been at before. He did see some white calcification spots that he attributed to the steroid injection the week before. They will do another injection on Thursday.
So, now for the OY VEY. Leah has been super, super fussy for the past week or so. Starting the day after her last dilation she started running a low-grade temperature on and off throughout the day, and she was having a hard time sleeping. She would fight off sleeping for so long that she would get overtired and cry even harder because she was too tired to sleep. Oy vey! She does fine at night – it’s mostly during the day that this was happening, and I think the hot weather has been a big part of it. She has also been spitting up here and there, and by Monday had added some projectile vomiting to the mix. She threw up 3 times on Monday (April 21), and was gagging for a great deal of the day. On Tuesday she gagged on and off throughout the day. On Tuesday evening I called the advice nurse to ask if maybe we should give her some Pedialyte to replace the lost fluids from throwing up, since she seemed very fussy. The advice nurse’s general protocol with a kid as complicated as Leah is to tell us to bring her into the ER – but it didn’t seem appropriate under the circumstances (and who wants to expose her to that if it’s not necessary?), so I kept trying to find a way to talk to somebody who knew Leah. I got SUPER lucky and her primary care doctor happened to be on the floor in peds Tuesday night, so he was able to call me back and talk with me about what was going on. We decided to keep an eye on her and give some Pedialyte if she continued to lose fluids.
On Wednesday Leah was in great spirits, and was a tiny bit gaggy but didn’t throw up at all, though she did have a slight fever as she had in the days before. By Thursday morning, the poor kid could not stop throwing up. We took her up to the hospital for some appointments, and she had her tympanogram in preparation for her ABR next week (if it’s still happening!!), but after the seventh episode, I made an executive decision and cancelled her speech appointment and made a beeline for the pediatrics clinic. My dad was with us and got there a little bit early to make an appointment with them.
Leah saw another new doctor who isn’t familiar with her case, but he reviewed her notes and spoke with one of the gastro docs who has done some of her dilations, and their hypothesis is that our BabyBug has… a baby bug. They put her on Pedialyte for 24 hours and made a follow up appointment for the next day. By the time we got home, her temp was 101.9, so I gave her some Tylenol as well. She seemed to do okay on the Pedialyte, and only threw up once, on Friday morning (though we saw a lot of gagging). We went back for the follow-up appointment and the doc seemed to waffle on the idea of a bug since Leah has only been vomiting and hasn’t had problems, well, on the other end. They did a chest x-ray and her lungs look fine, so despite the waffling he returned to his original conclusion that it’s likely a bug.
Of course, nervous Mama is now asking around to see what the symptoms of esophageal perforation are, since this all started when she got home from her dilation, but calmer Mommy suggested maybe she picked up a bug in the hospital last Thursday. We will ask about the possibility of a tear, but I think her fevers would be higher and she would be in more discomfort. It’s more likely she picked something up in the hospital. For the time being, Leah is on reduced feeds on a continuous basis. We will watch her over the weekend and see how she tolerates increased feeds. We’ll see how to proceed come Monday – Leah has two procedures scheduled this week, one under twilight sedation and one under general, and I’m thinking they won’t be doing either if she is still sick.
I’ll take a baby bug over a surgical complication, but I wish there was a way to be sure that’s what we’re dealing with.
I’ll post photos soon. Our bug is getting better and better at sitting up for a few seconds without tipping over! There will be video coming soon as well. 🙂