Allison and I were off to Ann Arbor by 6:15, and with a quick stop for a #8 at McDonald's, we made it to Mott's Children's Hospital at U of M by 7:50. Her first x-ray was ok. She was not happy, of course, but she stopped crying when the bright lights of the machine snapped her out of it.
The worse part of the day was the GI chest fluoroscopy airway test. She was strapped to the table, and her arms were velcroed together above her head. The techs seemed frustrated by Allison's strength, but I kind of gave Allison a mental "high-five" for her fighting attitude. We wouldn't get very far without it. When the doc came in they started the real torture. This baby, this complicated GI issues baby, was expected to drink and swallow (a task she has not had to do since January) 20 cc's of barium. Although I stated clearly that she has been tube fed for months and has suffered from vomiting ever since, they still put a rubber nipple in her mouth. When they realized that wasn't going to work, they resorted to squirting it into her mouth with a syringe. Well, that little baby wasn't having it. She closed her mouth, refused to swallow, choked, gagged, threw up - yeah, it was horribe. So the doctor had to put a ng tube down her nose to get her to swallow the barium. His initial thoughts were that her larynx "collapses" when she breathes. On to the ENT...
After calming down - almost to the point of sleeping - Alli J and I met the Ear, Nose, and Throat doctor. He, of course, wanted an overall diagnosis. I told him politely to "get in line." He said normal kids with laryngomalicia normally grow out of it by 15 months. If I know my Alli J she is isn't a normal kid. He explained how laryngomalicial in kids with neurological or mitochondrial disorders can get worse over time. He also commented that her "overweight" size can be putting extra strain on her respirations, making her snort even louder. I never knew that we would be facing all of the obstacle because she is too BIG. So we were instructed to do weight checks twice a month. After all the chit-chat, doc got down to it with his own scope. Poor Alli J - another tube down the nose. He saw that she has slightly enlarged tonsils, an irrated esophagus, and the biggest news to me was that her acid reflux has irrated the tissue in her nose. Yeah, she shoots it up that far. This doctor recommended we see speech pathology, GI, and surgery (to revisit the nissen) at U of M for some coordinated care. She also is scheduled for a swallow study next month.
Overall, I felt like it was a very worthwhile trip. This doctor really wants her to start taking things orally (don't we all) but does not see any benefit in waiting to figure out the "big picture". Of course I am hesitant to do anything that will induce vomiting, but it seems like she is just going to have to learn how to eat and swallow despite her GI issues. I do plan on talking about all of this on Monday when we see her GI doc at Bronson. Maybe he will have a different opinion, one I value very much.
I bothered Allison's pediatrician again to ask for a surgical referral, as the ENT took care of the rest of the referrals. I also need to make weight check appointments and figure out where to get her glasses made. But for now, I have three sets of papers to grade (if I get through one before Occupational Therapy tonight it'd be amazing) in this beautiful October sun.
Tomorrow we are back to Ann Arbor for a HUGE appointment with the genetic/metabolic doctor. She has all of our stuff from Mayo (hand delivered today) to look over. Can't wait to hear what she has to say. Another set of eyes never hurts.
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