It’s been a while since I’ve written about our dear bird. Mostly out of need to be tending my flock. The Quail had a good 3 weeks of health & wellness and we tentatively poked our heads out of our winter cave. Around this same time we had a swallow study done at the recommendation of our feeding therapist. To date the Quail still throws up. A lot. Daily. Multiple times. We had seen a pediatric GI back when she was about 6 months old and he felt she would outgrow this when she finally started on solid foods and got closer to a year. Unfortunately that didn’t happen. The swallow study is really the opening phrase in what might prove to be a long question. The SLP who did it did not see actual aspiration, but what they call penetration- where the food would go down, pool & bounce over to the lung opening, and then divert back where it should go. It happened with the breastmilk in a bottle up to about 1.5-2 tsps of added cereal per oz of milk consistently. At that point, when it was thickened to that level she had more control. She would also let the food and liquid pool in her mouth before swallowing. That finding in combination with her signficant history of upper respiratory illnesses over the last 6 months caused the SLP to postulate that she most likely aspirates by the time she finishes a bottle due to her difficulty taking the bottle and fatigue. Most likely micro-aspiration- tiny droplets and since they are so small our pediatrician’s usage of a chest X-ray to say that she was not aspirating last fall when she had pneumonia was insufficient in her opinion. She said from that moment on all liquids needed to be thickened and we needed to speed up our process to get her off the bottle and onto using the Honey Bear- ala Sara Rosenfeld Johnson. We have been working on this, and interestingly the swallow study showed her having better control of the liquid with the honey bear then the bottle. Although- in hindsite- we thicken the HB liquid with Mangos to ensure her interest- and were not thickening the milk in the bottle. They said the chin-tuck needed to drink from a straw as well as the thicker liquid allows for better control on her part. The final diagnosis was moderate dysphagia.
This was extremely disappointing news to me- both incredibly scary- that she could be aspirating; incredibly dumb-founding- that in all our analytical skill and attention we have applied to eating and health issues we could have possibly missed such a basic thing as her possible aspiration. And incredibly guilt-producing- that again we could have missed something so basic, and that we were unwittingly possibly doing something that could have contributed to her ill health these past few months. We also had chosen to take cereal out of her diet because of it’s effect on the lower half of her little GI system. We have managed to get her settled into Beech-nut Oatmeal- and it is a little less constipating then rice thankfully. The Beechnut also doesn’t clump like the Gerber does so it functions much better in the bottle. The other troubling part to this is we had been handing her a bottle during the night when she woke and cried and then all going back to sleep. The staff was clear this was a no-no. So for now she is back in her swing so that she can stay upright when she drinks during the night. Obviously this isn’t a long-term solution and we’ve only got about 4 more pounds till the end of this solution.
Our speech therapist helped to interpret the report. I wish we could have had her at the swallow study- it just hadn’t worked with her schedule. But the situation felt much less dire with her interpreting the actual report for us. Our OT who works on feeding issues pointed out the subjectivity of a given study interpretation as well. When our geneticist heard about the study he reiterated the importance of going back to the GI for follow up after getting an Upper GI study done. That study came and gave us a new diagnosis of duodenal stenosis. Once again I was floored. This is a congenital intestinal blockage that is extremely common in children that have Down syndrome. Typically it is found at birth and surgically corrected. The only thing we can figure is that since her’s isn’t a complete blockage and thus she was able to take in thin liquids and poop they used that to check it off the Ds checklist of concerns at birth. She has what was described as a windsock shaped webbing in the duodenum that narrows at the bottom of the webbing. It struck me as strange that this is the same description as the tissue growth that is slowly closing up her VSD as well. So thin liquids get through. As we’ve moved into “Stage 3” textured foods the throwing up has continued and we’ve often noticed that what comes up is the carrot or rice chunks in the food. Per our surgeon the bottom opening is so small they can’t make it through. He guessed that since she has obviously gotten enough nutrition to survive (!); she must be applying pressure to the food in her intestine and eventually pushes it through the tiny hole. She has always made a growling sound when she sort of tenses her belly throughout the day- we thought it was a noise indicating she was just peeing or pooping when she was small- I now think it was probably her pushing the milk through the opening.
So our little bird is going to be temporarily out of the nest. Our local Children’s Hospital, which I will most definitely be donating to during their next radio-a-thon, is going to be hosting her for what we’ve been told will be 4-6 days. The surgery to open the duodenum, excise the web and close her back up will take about 1.5 hours. He can’t do it laproscopically because he needs to see what is near-by to be sure to leave the bile ducts intact. After that she will be on a naso-gastric tube to clean out the area and an IV for nourishment for 2-3 days to allow the site time to heal. After that we’ll start trying to feed her again orally. He estimates it will take 2-3 days to get her back up to full feeds. At that point she can be released and go home to recuperate. We are unsure as to how long it will be before she can return to school- we are guessing about 1-2 weeks. Fortunately the situation isn’t emergent, as she’s gone this long growing well and we can hold off until middle of may when Lovey’s semester will be over and hopefully Grandma can come stay with us to help tend the nest.
Please think good thoughts for our dear Quail and our lonely hearts while she is away from home. We are so hopeful that this all explains the vast majority of the feeding difficulties she has and in a few months she’ll be eating like a champ.
Speaking of which we had two little-biggies this weekend:
1. She’s got a spare! Tooth number too also front and bottom center poked through!
2. She suddenly learned to drink from a straw! This will aid the change over to the honeybear hugely! I don’t know if it suddenly clicked for her or if she just finds the new drink so very tasty. One of our local organic grocers started stocking “drinkable yogurt”. As Zuzu is a kefir-fiend through and through we had to get this for her to try. Well we added some to the Quail’s honey-bear thinking the consistency might be just right and our little bird suddenly started sucking it up with a perfect chin-tuck! I’m so proud! Fly lil bird fly!