Sunday, May 21, 2017


Ivy is such a champ. It's so amazing to watch this kid maneuver through hospital visits and strangers poking her.

On Wednesday morning, I called the surgeon's office as soon as they opened. The doctor who works with us often (she works with the surgeon and often our routine checkups were with her) called back after having made an appointment for us with the radiologist for early afternoon, to give us some time to get up there, and said that the surgeon had earmarked Wednesday morning for us for another dilation, if the esophagram showed anything. So Cory opted to stay home, since we were going to just go up and come back.

Ivy was pretty nervous this time, but she laid on the table bravely, and only cried a little bit. They filled a sippy cup with a contrast she hadn't had before (it's always been barium before) and we did what we always do - suited up in our lead aprons and fed her while she laid on her back and then on her right side. And when we were done, I snapped a quick cellphone picture of the screen. (I'm gathering a collection of them, apparently.)

We ran upstairs to the surgery office when we were finished, and our regular nurse helped us out, before the surgeon came in. I told him what I thought it was - lunch meat - and he said "ah, yes, protein again! Just have to cut it smaller!" I told him she had eaten that same lunch meat cut in that same size a dozen times before with no trouble, though I was more telling my guilty self. He offered to admit us so that we could spend the night in the hospital and not have to go home and come back, but last time we did that was awful, so I stayed far away from that idea. Then he ran off to check on insurance stuff and never came back, but another nurse came in to tell us what time to show up in the morning (5:30).

Back at home, at bedtime, I tried sideline nursing Ivy in bed. But the milk was coming back up, so Cory had to get her to bed without me. It was hard, but after quite awhile she was out. And then of course she woke up a few minutes after I went to bed myself, and I put her on the other side of me to try to nurse her back to sleep and the milk went down just fine. So the meat must have been on one side of her esophagus but not the other. She went back to sleep, and Cory went to sleep, and I stayed up for quite awhile longer, letting my brain process for awhile.

3am came pretty early, but one nice thing about going to the big city at dawn is the manageable traffic and the plentiful parking spaces. Ivy slept in the car, so by the time we got checked into the children's day surgery unit (because it was scheduled, we weren't admitted) she was well-rested and in a good mood. That made alllll the difference.

We had an hour until we had to be in the OR, so after taking vitals we were free to roam around the halls. There were several other kids there too, but most chose to stay in their little rooms, so the halls were wide open for us. In one corner, a dozen ride-on toys were parked, so we walked around the halls about sixteen times, pushing Ivy in cars and ambulances and taxis and trucks, until we were summoned back to our room to be transported to the OR.

The nurse gave Ivy a syringe of an anti-anxiety medicine, so that she would be relaxed when they took her away from us, and Ivy sucked on the empty syringe for half an hour as we got checked into the OR and waited to talk to the anesthesiologist and the surgeon. I overheard the people next to us saying goodbye to their infant who was about to have a 6-hour heart surgery, and I wanted to give them hugs. Ivy settled into her bed as the meds kicked in, and they wheeled her into the back.

Since we're experts at this now, we knew how much time we had (and we were more relaxed!) so instead of huddling in the surgery waiting area, we walked over to the cafeteria and grabbed breakfast and coffee and brought it back to the waiting room with us. It was really nice to feel so much less anxiety over the procedure, even though there was still a lot of anxiety over her general condition and what we were going to do to keep food from getting stuck again. But breakfast made the hour go quickly, and then the surgeon came in to talk to us.

The surgeon had poked the stuck food down her esophagus, and with just a little nudging it went down easily. He said again that though he had dilated that day and planned to do it again, it wasn't a stricture that was causing the food to get stuck, it was a lack of motility at the original repair site. I asked again if we should just avoid meat altogether, and he said it wasn't necessary, we just had to cut it up very small (like mincing, I assume). And he assured us that it would get better (we know that, but it's nice to hear).

After another few minutes, a nurse escorted me into post-op, where Ivy was just waking up. It was quite a difference from last time, when she was so sleep-deprived from the horrible sleepless night in the hospital that she half-woke from anesthesia and then took a three hour nap. She woke up, took a few minutes to be groggy, and then by the time we carried her back up to our little room in the day surgery unit she was doing pretty well. She always has some big coughs just afterwards, and tape residue around her mouth, and her breath smells like plastic for a few hours. The nurses brought her apple juice and a grape popsicle, and she made short work of them. And then we got our discharge papers and got to go home! As much as I appreciate the hospital, it was really nice to be able to play in the halls and be in and out relatively quickly, and not have to constantly be on the monitors in the day surgery unit.

I assume we had a prescription for painkillers (we did last time), but we didn't fill it (and didn't last time, either). We went home and gave Ivy some Tylenol in the afternoon, which was all she needed. And Ivy is back on purees and liquid until she goes in for another dilation on June 9th. So 22 days of liquids. Poor thing.

Monday, May 15, 2017


Last Thursday was Ivy's post-procedure check-up, after two weeks on pureed food. We had a good discussion with the surgeon to ask what next steps were. He said to keep giving her chicken, just cut it up smaller. And when she got something stuck, even if she is able to bring it back up herself, he wanted to know about it; as he would likely dilate again, even though he thinks biggest reason things are getting stuck is the lack of mobility at the surgery site.

I've been struggling with some pretty heavy guilt today. When I picked Ivy up from daycare, I got a report that something (likely lunch meat) had gotten stuck in her esophagus at lunch, and while water was getting down at the end of the day, purees weren't. I confirmed it at dinner - some purees were getting down, and plenty of water too (thank goodness she wasn't being obstinate and spitting everything else), but that was it.

So the current plan is to monitor her through the night and into the morning, and call the surgeon in the morning if things don't get better. She has had lunch meat stuck before, many months ago, and it ended up coming up the next morning without me even knowing it was stuck, since breast milk was getting past it, so I'm hoping this is a similar situation. I was able to get her to chug some "milkshake" (Pediasure) earlier, and I'm hoping it forced the food down. In the meantime, she's in a happy mood, and is singing and playing and being generally happy and normal.

But boy, this guilt. Is this happening because I'm not cutting her food small enough, even after two trips to the surgeon? I'm definitely less conservative than Cory is, in terms of bite sizes, because almost everything goes down just fine... until it doesn't. Is it something we just have to live with, and nothing we do will keep it from happening? I have no idea what the norm is, because there's such a range of severity with EA/TEF kids and most of the moms in the Facebook support group (the ones that post, anyway) have kids with g-tubes and oral aversions. I just keep coming back to how I should be more careful, and cut everything so much smaller than I think I should. I don't know. I just know that it feels a lot like my fault, whether or not it is.