Wednesday, January 25, 2017

Hospital Visit

We have spent the last few months since my last post being kind of insulated and routine-y, going to work and coming home and doing chores and enjoying watching Ivy continue to develop. I had a post all set to go with a list of words that she could say, but then she had a vocabularial explosion (heh) and I couldn't keep up. She's even started rocking the two-word sentences. So the post remains a draft.

Christmas was also great fun; I loved watching her as she got the hang of unwrapping gifts, and played with her cousins and ate little bits of cookies and things. Oh, and she had a pediatrician appointment last month, where she finally realized that doctor's office = shots and was duly upset, and a routine appointment with her TEF surgeon, where she doesn't get shots but was still concerned that they'd change their minds at any moment. Both appointments were successes; in fact at the surgeon's visit we saw him for a total of three minutes.

For Sunday's dinner, we had some wonton/dumpling things and some stir fry with chicken. Ivy shared out of my bowl, and since I was cutting up individual bites as I went, I cut them especially small and fed them to her.

I sometimes have wondered about whether I cut food up too small, whether Ivy has mostly grown out of needing me to do that extra effort. Sure, things get stuck a little bit, but she has figured out that if she sticks all four fingers down her throat, all the way up to the joint where her fingers meet her palms, she can gag herself and bring up whatever is stuck. It's usually things like tomato skins, or chicken, or various things that she doesn't chew. It scared me a bit at first, and I even asked in the TEF community on Facebook if I should be worried about her new habit. The consensus was that she's pretty smart for figuring out how to get the stuck food out, and I eventually grew used to it. I remember even the other day when I picked Ivy up from daycare, one of her slightly younger classmates was eating whole pretzels. I thought "hm, if other kids are OK eating that stuff, I wonder if Ivy'd be able to work it out?" But the previous week she'd gagged herself and brought up a small piece of ham lunchmeat from 24 hours prior, so I was pretty sure I wasn't being entirely overprotective with my small-cut food and my tomato skinning.

On Sunday night we got ready for bed, and as Ivy was nursing at bedtime she suddenly stopped and stuck her fingers down her throat. She'd only been drinking milk, and had nothing else since dinner, but the fact that milk came up made me wonder if there was something stuck in there, preventing at least some of it from going on. I made a mental note of it, and gave her a bunch of waterwent to sleep. (We ended up having a terrible sleep - she nursed on one side so long that it started to get painful and I tried to pop her off to switch sides, but she was awake enough to fight with me about it. She was wide awake for at least an hour, and I think only half-asleep for lots longer than that. Could it have been because whatever was stuck was uncomfortable? I wasn't sure.)

The next day, we were at lunch when we got a text from daycare, saying that Ivy wasn't able to keep anything down. She'd take a bite and then gag herself, and it was happening a lot more than usual. So we took her home and I left a message for the surgeon - if it was still stuck and bothering her that much, it was starting to seem like a concern.

As I waited for a call back from the surgeon's office, I fed her pineapple juice, which I've read has an enzyme or something that helps stuck food go down, and experimented with giving her purees and very small bites of food. Everything came up, save some of the water and pineapple juice. She didn't act any different than usual, other than the frequent gagging, and that made me feel good - and she had wet diapers so I knew at least some liquid was getting through.

Finally, the surgeon's assistant called back and asked a bunch of questions. At first she'd been leaning towards having us go in that evening, but as Ivy wasn't dehydrated and we were an hour and a half away, she consulted with the surgeon and set up an esophagram (x-ray) for 10:30 the next morning. Almost immediately after the phone call (around 4pm), Ivy fell asleep on me and ended up sleeping for fourteen hours straight. (Hooray!) I took the opportunity to get a few things packed up too, as the surgeon had said there was a chance Ivy would be admitted, depending on what was going on in there.

In the morning, we packed more things (a couple changes of clothes for her and me, in case she puked up barium from the esophagram) on me), some books, a doll or two, etc. and headed up to Portland. Ivy was not excited about the x-ray; she cried a lot as we forced her arms up above her head and pinned her down. But when we were done (it's a pretty quick procedure) I glanced up at the monitor and and could immediately see that something was stuck in there.

We got Ivy dressed and walked up to the surgeon's office to await further instructions. "We need to admit her; we are just waiting for them to get a crib in the room." So we went down to admitting, and then up to the 7th floor of the children's hospital, 5 floors above Ivy's first room in the NICU.

We were third in line on the surgeon's schedule, so we hung out in the (really nice, big) room and tried to play with Ivy a bit and then try to get her to take a little nap. But without being able to nurse, and being in a strange place, she was not at all interest in letting her guard down. It ended up being OK, because it wasn't long before it was Ivy's turn.

We were escorted down to the pre-op room in the basement of the children's hospital, where we talked about the procedure with the OR nurse and the anesthesiologist and the nurse who would be assisting in the procedure. Everyone made sure to repeatedly reassure us that it wasn't a big deal, it wasn't actual surgery, but we really weren't worried - after all, it was being done by the surgeon who did her original esophageal repair. And the procedure was to put her to sleep with gas, put an IV in her hand while she was under, and send a scope down her throat to see what was stuck and pull it out. They would also check to see if she needed a dilation (if the food was stuck because of a narrowing of her esophagus) and do that while she was under.

Then the nurse grabbed Ivy and whisked her away, and we were ushered into a waiting room, where we waited for about 45 minutes, and then the surgeon came out with a little jar of a rather hard-to-identify piece of half-digested food. (And it was a small piece too: about the size of the tip of my finger; easily swallowable by a toddler.) He said everything went just fine, and she had no stricture, but that the food just happened to hit the exact spot where her muscle motility pauses.

I'm not sure how much I've explained that here, from her original surgery, but when the surgeon cut and sewed her up, it meant that the muscles in her esophagus don't move food down in one smooth motion: they stop at the repair site and then pick up again just below.

The surgeon said she'd probably take another ten minutes before we could go in and see her, but it ended up being more like twenty. And then the nurse came in and led us to our sweet sleeping girl, lying on her side with her arms curled up and the sweet little rosebud mouth that she gets when her face is a little squished, just like the day we first met her. Her daddy was the first person she saw when her little eyes opened.

Once she was fully awake (and a little upset), I was able to carry her as we followed the nurse back up to Ivy's room. They took her vitals and we showed her nurses the little vial of what we concluded was likely chicken. (They were all wondering what it was in there!) And then, finally, she was able to NURSE. That was the best part of the day - it was so hard to tell her no when she was in a strange place with strange people and tired and uncomfortable. She nursed for a good long time, and we ordered room service (as a nursing mom, I got a "free" tray and Cory had to pay extra for his) as we hadn't eaten anything since breakfast, aside from a tiny vending machine snack while we were waiting for the procedure to finish.

We had to wait for a wet diaper, which was delivered about an hour after nursing, and then we got discharged. The nurse warned us that IV removal was usually not very fun for little ones (I had been dreading it too) but Ivy just sat on Cory's lap and watched the nurse pull it out. And then we were free! Ivy fell asleep at about 7, as we were on our way home, and we were home by 8. (She only slept until 4am, but that's another story.)

Today she's eating and drinking and acting like normal. I did give her a few tiny pieces of chicken with her dinner tonight, after a lunch of soft foods, and she has stuck her fingers down her throat a couple of times which worries me - but hopefully I'm just being overly concerned. Guess we'll see - that would almost be amusing to go up twice in two days for the same problem twice over. Almost.