It’s been a while since I updated the hive on D’s Journey! We have some exciting news to share… D passed his last swallow study! He has no medical restrictions on what he can eat by mouth anymore – which is such a HUGE deal!
At D’s previous swallow study (when they give him barium and watch where it goes in his mouth/throat under x-ray) in October, he was cleared to have thickened liquids. I feel like a broken record sometimes for explaining this, but “thin” liquids or regular water (or juice, etc.) are the hardest things to eat safely, since they can move so quickly down your throat. In October, D let some of the liquid into his lungs, which is very dangerous. They left us with instructions to work on the thickened liquids (and anything thicker, like baby purees or crackers) and come back in 6-12 months for a repeat test.
D had been great in the meantime — he learned to drink from a straw and got a lot more coordinated with eating purees and some other crunchier foods. He never took in a large volume of liquids (so I never reduced the amount he got through his feeding tube), but at least he was interested in drinking! At his 18m checkup I asked for a referral for another swallow study, which happened last week. I was SO nervous for this, it felt so deterministic; why did I ask for it at the low range (6 months after instead of 12?). This was not a sure thing for him at all… depending on how his cerebral palsy affects his oral muscles, there was a distinct possibility that he would just be unable to handle certain textures, ever.
The swallow study cycle repeated for us – D was oblivious and I was nervous. One notable difference was that it was the first time he was walking around the waiting room on his own! He was adorable (although I suppose I could be biased), and was curious about the other kids and wanted to push everyone’s strollers. When we finally got called back into the x-ray room, D walked right in like a grown up, before turning around and walking right back out! His least favorite part has always been getting strapped into the chair. It’s a plastic chair with big velcro buckles that’s raised up so the child is at adult height, and I guess it’s an unsettling vantage point! D was holding on to me tightly but I had to unclench his little hands so I could put the lead apron on. I always feel guilty that I get the apron and tiny D gets to fend off the radiation all on his own, but what can we do?
There were two speech therapists (I think one of them was a resident) and a radiologist. The therapists had prepared a bunch of different textures for D – but hopefully he would pass fine on the thin liquids and we would be done! They have always let me give him the barium which I am thankful for, since I can control the volume and speed. They had me give him sips using a straw, and I was very careful to be sure that I only gave him tiny sips before taking it away – which they weren’t thrilled about. I wanted to give him a fighting chance! After he did ok with those they had me just give from the cup to get a larger volume, and thankfully he did great with those too. At one point they said something like “oop, that was a flash penetration” but then we kept going. I was afraid that meant he failed, but thankfully they then said he was all done, and that he had done well!
I had to pry it out of them that he has “passed” and then got them to high five D and me! They said the flash penetration means he let a little of the liquid go on the wrong side of his esophagus (I think) but didn’t let it go in his lungs. Apparently it’s typically just a coordination issue, and since he obviously had no experience with thin liquids before that point, it was reasonable for him to be a little clumsy!
I’m totally over the moon that he passed! I happily updated all of our friends and family, who had been crossing fingers for us that day. It’s so amazing to me that D went from being allowed literally nothing by mouth in May of last year to anything he wants in April! He is growing by leaps and bounds and it is so wonderful.
Doesn’t he basically look like a teenager here? I can’t handle it!
We’re settling into the new normal now, including actually bringing D a drink to the playground! D has an appointment with the GI docs in two weeks, when I plan to ask about how we can get him to take in more calories by mouth and less via the tube – I don’t want to start switching things up without their blessing. I also plan to stick with their recommended short gut diet for the time being, so no sugar (juice, fruit, etc) or dairy are the big ones when it comes to liquids. The docs recommended mixing his oral rehydration solution with sugar-free Crystal Lite, which he seems to like! If he can tolerate drinking 8-ish oz of the ORS, 3 times a day, he can be off his feeding tube during the day and just use it at night for formula (and calories).
I’ll keep you all up to date on how much progress we make on getting off the tube, but I expect it will be a long long time before that’s possible. I actually think it won’t be until D is old enough to understand WHY he needs the tube – because of his short gut syndrome, he needs to take in much more calories than a typical child. I can’t imagine that he’ll be able to do that without some realization or explanation – I’m imagining typical toddler mealtime bargaining with a twists like, “D, if you don’t drink 8oz and eat this sandwich I have to hook you up tonight!”
Regardless of what this means for D’s future (although I think it’s a pretty awesome sign!) it’s still such great progress, and great from a safety standpoint as well. I was wondering how I could trust him being in a daycare setting and explaining that he could have (thickened) liquids from home but not drink out of the water fountain, etc. So much easier to just say no juice or milk!
Thanks again to all of you who have been pulling for D – we appreciate it SO much!
D’s Journey part 13 of 131. D's Journey, part 1 - Premature Labor and an Emergency C Section by Mrs. Tiger
2. D's journey part 2 - 1st NICU stay by Mrs. Tiger
3. D's journey part 3 - briefly home by Mrs. Tiger
4. D's journey, part 4 - Necrotizing Enterocolitis by Mrs. Tiger
5. D's journey, part 5 - 2nd NICU Stay by Mrs. Tiger
6. D's Journey, Part 6 - Intestinal Rehab by Mrs. Tiger
7. D's Journey, part 7 - home again! by Mrs. Tiger
8. D's Journey, Part 8 - Early Intervention by Mrs. Tiger
9. D's Journey, part 9 - Cerebral Palsy by Mrs. Tiger
10. D's Journey, part 10 - Physical Therapy by Mrs. Tiger
11. D's journey, part 11 - Eating by Mouth by Mrs. Tiger
12. D's Journey - My Perspective by Mrs. Tiger
13. D's Journey - A Giant Leap by Mrs. Tiger