And so it begins!

As you know, LeahBug’s speech pathologist has been giving her tiny amounts of water, breast milk and baby food purées in the clinical setting so she can evaluate and give Leah some practice at eating. She didn’t want to really move forward at full speed until Leah had a swallow study to ensure that she is not aspirating as she swallows – that is, to make sure stuff is going down the right “pipe,” so to speak.

Leah had her swallow study on Monday. For the record, she does not enjoy the flavor of “radioactive.” Aunti Staci came along to watch the swallow study since she had never seen an infant study, though she has performed many on adults.

During the study, Leah tried breast milk first and then a barium liquid that has the consistency of water, and then sweet potato purée.

So. The good news is that Leah did not aspirate when swallowing. She did a great job of directing the food into her esophagus. She did not successfully suck liquid from the bottle nipple, so they had to widen the hole so she would get some milk just by nomming.

The bad news is that after Leah had a spoonful or two of sweet potato, Aunti Staci pointed out that the food appeared to be pooling in her esophagus. The radiologist confirmed this. Setting aside my alarm that my sister was the first to spot this and not any one of the multiple speech pathologists or the radiologist or any of the several other people watching the study… the fact that the food was pooling indicates that there is some degree of stricture at the surgical site, which I have been asking about for a good month now. They stopped feeding at that point and waited for the food to clear. It didn’t clear while we were in radiology, but we know it eventually went down because 1) it didn’t come up, and 2) there was an epic radioactive poop later in the day. FYI.

So. I called Leah’s surgical nurse practitioner and discussed the outcome of the study, and she said she would consult with Leah’s surgeon and get back to me. I have been concerned about a structure for a while now, and have always said I didn’t want to proceed with full feeding until we knew whether this was happening to her. I just kinda had a feeling. Her surgical team has definitely paid attention to my concern, but the general consensus has been that as long as Leah isn’t showing signs of stricture (mainly, as long as she is able to swallow and keep down her own saliva and isn’t showing any signs during feeding that there might be an issue), we could afford to wait a couple of months before bringing her in, mostly for the sake of keeping her out of the hospital for the duration of the flu season. The idea was that they would bring her in during the springtime and do an actual endoscopy so they could really see how the surgical site was looking, instead of doing another contrast study. If she needed a dilation at that point, they would do it right then.

Well, usually I enjoy being right, but this is not such an occasion. After reviewing the images from the swallow study, Leah’s surgeon and GI agreed that she should have an endoscopy and (if necessary) a dilation sooner so that we don’t delay feeding by several months. So Leah will return to the hospital next Thursday for this procedure. Hopefully this will be an outpatient procedure. It is pretty standard fare for a kid with esophageal atresia, but it is still scary whenever they have to knock her out. I know she has been put under multiple times, but it will always make me nervous.

In other news, Leah’s Regional Center services should be starting any time now. It has been frustrating trying to get it started because of the timing – everybody slows down during the holiday season. Leah’s therapies at Kaiser have been minimal; she is on a regular speech schedule, but her last two OT appointments were canceled by the clinic at the last minute, and they are supposed to be referring her out for PT but seem to be dragging their feet. As a result, Leah has *never* had PT, and has only had one OT session since leaving the hospital over 2 months ago. She did have another OT assessment this week, and her abilities ranged between 12 and 20 weeks. All she is getting is whatever playtime we are able to provide at home. Assuming all goes as planned, that changes starting next week.

So that is that. No pictures this time, but watch for photos from our return to Disneyland yesterday! We had one day left on those awesome park hoppers and they are good for 13 days – couldn’t let that last day pass us by!!

3 thoughts on “And so it begins!

  1. Praying for Leah n the family to be strong….God is good n u have many ppl praying….Sorry to hear she has to go back to the hospital to get more stuff done….I know u all r just tired of all this hospital n doctor stuff n just wishing all this stuff w/ Leah would just be normal….But God willing things will get better for her n the both of u moms….Glad to hear u all got to enjoy some fun at Disney so fun…. 😉 😉

  2. Poor child has been through so much at her wee age. I am praying and I know something good will become of all this. Hang in there Mommies. There is a light at the end of the tunnel…somewhere!

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