Modified Barium Swallow

Today Grayson and I woke up early and drove into the city to the Phoenix Children's Hospital.  It is actually a very cheery place, bright and welcoming, and I was thrilled to find that they could accommodate my Starbucks addiction on such an important day.

We checked in at 9am as we were instructed to, even though his appointment wasn't until 10am, and after the look the receptionist gave me I now know that no one actually comes that early.  We toured the beautiful lobby, cafeteria and gift shop until Grayson was awake enough to let me sit and drink my coffee while he entertained me with his smiles.

During the Modified Barium Swallow, Grayson was strapped into a seat resembling a plastic car seat next to a movie-type x-ray machine.  He was bottle fed liquid barium in three progressively thicker consistencies while the tech and speech pathologist watched the screen to evaluate his ability to swallow them safely and effectively.  They then spoon fed him barium and used a syringe to complete the study.

I'd say it was a little traumatizing for the boy but in reality I think he was just mad that he wasn't getting fed for real.  He did not like any of the barium offered (who would?) but he did swallow a little of each consistency and the pathologist was able to provide me with a lot of information.

Though we were doing this test to help understand why he hasn't been swallowing a lot of solid foods, they found a surprising and more pressing issue.  He was diagnosed with mild to moderate Dysphagia or penetration of his airway with fluid as he swallowed which can cause fluid to enter the lungs.  When I mentioned that he has been sick almost non-stop the last few months with colds and viruses as well as a few unexplained high and persisting fevers, the pathologist was very concerned and said that that is a tell-tale sign of aspiration in infants who are consistently fighting off infection in the lungs.  She said that he was at risk for Pneumonia but we have probably side-stepped that so far since he was primarily breast fed and breast milk absorbs back into the body better than formula.

Let's stop there.  This was a lot to take in in a matter of about forty seconds.  I was shocked but also so relieved to get an explanation not only for some of his breast feeding issues (which I was not expecting) but for his poor health and frequent fevers that pediatricians just kept guessing were viral.

After the test was over we had a consultation with the speech pathologist and she was incredibly helpful, warm and informative.  I was directed to strictly bottle-feed (either breast milk or formula) and thicken all of his bottles with a thickening nectar.  This will help him swallow it more effectively and engage the muscles properly to close off his airway and send the fluid to his stomach.  She was encouraged as we talked to see that he would eat cheerios one at a time out of my hand but recommended us for feeding therapy for his delays in swallowing most solid food and his aversion to using a spoon.  She guessed that there is some pain associated with eating for him, whether from his acid reflux or the aspirating issue making him hesitant to swallow.

In the meantime, we are to continue with cheerios and try different flavors of them simply to expand his palate.  He does shovel in a few foods now by the fists full (blueberries, grapes, avocado, sweet potato, apple and pear shavings, and he'll pick at peas) but he chews and then spits 99% of them out.  I was encouraged to keep giving him as much as he wants, even if he is spitting it out, because eventually he will begin to swallow more and more.  She also told me to give him at least three spoon or forkfuls of food at each meal to help that become a safe and comfortable way to take in food, even if he spits it right back out.  She suggested giving him a cheerio on a spoon since that is a safe food for him so we'll see how that goes.

Stuffing his face with Avocado.

This evening Grayson did take his whole thickened bottle, something I never thought would happen right away since he is so picky.  I'm not convinced that tomorrow he won't reject the whole thickening idea but for now I'm encouraged.  I am planning to pump for a couple of days but begin to wean him as soon as I'm confident in his soy formula intake.  Pumping before every feeding on top of already supplementing with formula, thickening and cutting up massive amounts of finger foods for him to chew and spit into his bib is a little too much for me on top of making meals for Ava (and myself if I'm lucky).  We are just a few weeks away from being able to try dairy again (did I mention on here that he is allergic to dairy?) or at least switch to soy milk, so for my own sanity the weaning will begin now.

Breast feeding him has been a labor of love and not particularly enjoyable with his need to sit upright and fight to finish a feeding, but I was surprisingly emotional at being told I had to stop.  Just like that.  I have been looking forward to the end but I wanted to finish on my own terms, relish our last feeding together and make it to 12 months.  I compromised and when we got home, after tucking Ava in for her nap, I swaddled Grayson, rubbed his fuzzy little head and fed him one last time.

I was not particularly prepared for this blur of a day but I'm so thankful for a better understanding of what's going on in Grayson's body.  My heart aches knowing that he's been dealing with this discomfort and possibly pain for such a long time and I am amazed at his sweet, happy and care free nature in spite of it.  I cannot wait to get this boy healthy, clear out his lungs, get him fed and gaining more weight and see what this newfound energy will do for his unashamedly curious nature!  This boy is such a joy and a blessing to us!