Some Days Suck - Literally

Today was Joey's repeat swallow study.  His last one was when he was only 2 months old.  It seems like forever ago.  We used to wheeze, cough and eventually projectile vomit after every feeding those first two months of life.  And, despite all efforts and daily visits to a lactation consultant he did not have the energy, coordination or stamina to breastfeed.  When we finally figured out that he was aspirating it was a shock to the system.  Going through bottle after bottle and nipple after nipple to figure out what in the world he would be able to get his now-thickened milk out of was ten days of hell.  Suddenly we were being aware of "protecting his airway" when he eats.

We were put on the Simply Thick Honey level thickener.  There are three levels-- Nectar, Honey and Pudding.  We were put on the Honey thickened level.  In short order we learned that our $200-$300 monthly thickener habit was not covered by insurance.  Their stance was that they do not "cover nutritional supplements".   My argument was that since his thickener is both calorie and nutrient-free, it does not qualify as a "nutritional supplement".  Their response, "We do not cover nutritional supplements".  Our response was that without the thickener, Joey would spend days, weeks, and possibly even months of potential chest x-rays and hospitals stays to cope with aspiration caused pneumonia.  We were denied yet again. 

This new feeding regime also meant that he could not have any liquids or foods that were less thick than the Honey thickener (which is actually thicker than real honey--it's more of a gravy thickness).  This has also meant that he can't have any fruit that squirts liquid (which includes most of the common fruits like apples, oranges, grapes, watermelon, etc.  Bananas and avocados are his main fruits right now).  During a recent trip to Menchie's we figured out that he can't have ice cream because it quickly turns to liquid in his mouth and then he aspirates.  


Once we started the Honey thickener (we use Simply Thick brand) our lives were changed.  Yes, the bottles are way more annoying to prepare and clean, but all of sudden feeding our baby wasn't a nightmare.  He was able to keep his food down.  He stopped having to get chest x-rays.  He stopped wheezing and coughing after every swallow.  It was actually a blessing to have figured this out so soon.  I credit his good eating to the fact that this was caught early and he didn't have months and months of negative eating experiences.  

This month he is 17-months-old and a repeat swallow study was recommended because of how well he is doing eating (he independently eats almost all of his food that doesn't require a spoon-- Nutri-grain bars, crackers, cheese, turkey, Cheerios, toast, waffles, bananas, shredded chicken, potatoes and more).  He also holds his own bottle while he eats, which is really impressive (according to his nutritionist and therapist-- and I believe all compliments about him and hoard them away in my heart!!!!).  

Today I told myself,my husband and my mom that I was not going to get my hopes up for Joey's Swallow Study.  I just wasn't.  Well, I lied.  My hopes were up.  I wanted so badly for Joey to stop having to take thickened liquids.  For him to just be able to drink regular milk and water without that nasty (but super helpful and life-altering) goop in it.  I was a conflicted mess.  Ultimately, Joey doesn't even care.  He eats great.  He is able to swallow great on the thickened feeds.  Bottom line-- he is doing amazing.  But still-- I just wanted to catch a break.  To hit the "easy" button today.


On our way from the parking garage to the hospital we got into an elevator and there in a stroller right by Joey's stroller was an adorable little boy who had the identical winter hat on that Joey wore today.  His mom and I just smiled.  Then I looked closer.  Did this little cutie pie have Down syndrome?  Seriously?  I never want to ask someone if their child has Down syndrome, but we started talking and comparing mom notes.  Indeed, her son does have Down syndrome and he has a twin sister who does not.  Like Joey, this little guy also had open heart surgery.  He was precious.  We walked together across the bridge and talked about army crawling, walking, eating, drinking and getting blood drawn.  It was such kismet to meet this mom and son--it was one of the highlights of the day.


Back to sucking-- basically, we did the swallow study again where they had Joey swallow various barium mixtures thickened to various consistencies out of a variety of bottles and sippy cups.  He immediately "silently" aspirated (which means he didn't cough or choke-- if you or I aspirated--think of water going down the wrong pipe-- we would immediately start coughing and choking) on the nectar thickened and so we are staying with the Honey Thickener.  Is this because of his hypotonia (low tone)?  Possibly.  It is possible that his low tone makes it hard for his body to sense when he is aspirating.  It could also just be a wiring issue in which his brain isn't able to coordinate his sucking/swallowing, yet.  We just don't know.  All we know is that he silently aspirates regular liquid and he comfortably swallows honey thickened liquid.  Nothing new.


So, no progress on the aspirating/sucking front for now.  But that's okay.  Joey's healthy, he's happy and he is eating and drinking.  Not much more we could ask for. 

All the photos today are by the talented and beautiful Nat.