A few weeks ago when I wrote this post, I was in a bad way. Things were horrible with a capital "H." I'll see if I can summarize the past five months in a few sentences.
In December, Luke got the stomach virus and started throwing up. He never really recovered and then got a double whammy of the flu and the stomach virus again in February. All the while, most of his calories and nutrients were coming from a liquid supplement, Kid Essentials, which he drank through his sippy cup. We were also adding a powder supplement, Duocal, to that concoction. About four weeks ago, we went from bad to worse. He was throwing up, on average, 1-2 times a day and gagging about 20 times a day. Sometimes just seeing food or feeling a certain texture would cause it. Even therapy, which we've been doing since February, wasn't helping. But four weeks ago, he started throwing up 3-4 times a day and he wasn't even taking in a third of his calories.
Insert MAJOR freak out here. I started calling intensive in-patient hospitals that specialized in feeding therapy. The only one we knew of was in Dallas. There was a 10-month waiting list, but we were told Luke might be a candidate for a quicker admission. We called a chiropractor, a child psychologist, our priest and the Dalai Lama. Ok, maybe not that last one, but I really wasn't counting anybody out here. I cried some serious tears and laid LOADS of mom guilt on top of my already full plate. I think I looked up Dr. Google, too.
Bad, bad idea.
After a visit to Luke's pediatrician and a phone visit with his gastroenterologist, it was decided that Luke needed to undergo an endoscopy (scope down the throat while under general anesthesia) and a biopsy so we could find out the source of his extreme vomiting.
As providence would have it, his gastro went on a planned vacation the next day and so we scheduled the procedure for this week. The day after calling her, I was preparing Luke's supplement when I realized that none of his sippy cups were clean. I shrugged my shoulders, inserted a regular straw into the supplement and let him drink it without the Duocal. By lunch, he hadn't thrown up yet. I decided to forgo the Duocal the remainder of the day just to see what he would do.
No throwup, no gagging. At this point, my mom instinct that I had been pushing aside for weeks surfaced. The next day, not only did he down 24-ounces (a record!) of Kid Essentials, but he actually put food. In. His. Mouth. and happily played in his highchair.
I did a brief raindance, threw out every trace of Duocal in our house and lit fire to the container.
At therapy, Luke took a bite of every food his therapist put in front of him. We both cried. I waited to see this behavior for two weeks and the morning before his procedure I called his gastro and promptly cancelled the endoscopy and biopsy. I wasn't really looking for permission because I knew it was the right thing to do.
Answered prayer, without a doubt.
Don't get me wrong. We have loads more progress to make. Luke is still only eating hard, crunchy textures and he's still gagging occasionally. His muscle tone inside his mouth, particularly his tongue, is extremely low. We have our work cut out for us.
BUT. We have taken the g-tube surgery off the table. Again. Our gastro just laughed when we saw her on Tuesday. "Threaten him with a procedure or surgery and he whips right into shape, doesn't he?" For the record, I really love Dr. Berhane. She is the bomb.
Thanks for the prayers and the patience as we navigate this very uncertain, very slow road to getting Luke to eat (and to talk!) in an area that is age appropriate. I am grateful to so many of you who reached out. Thank you. There's a song on the radio that reminds us that perhaps the trials of this life might be His mercy in disguise.
I believe that, wholeheartedly.
