MMMMMMM icing!!!!!!!! Now here is a girl who enjoys the good things in life... that's right .....FOOD!!!!!!!!!!!! I have spent the last 5 years literally obsessing over getting Makayla to eat. She was diagnosed with the term failure to thrive at 10 months of age and from then on I set out on a mission to get lots of healthy calories into the girl. This literally was an all day event, every day, and let me tell you for every bit of food she ate she quadrupled in amount for me to clean up! No shirt ever survived!! Whats that you say, why didn't I get her to wear a bib, well perhaps you haven't heard the term sensory disorder! Makayla felt about bibs (form day 1) like I feel about sleeping in a bed of snakes! Dear God I will now have nightmares just for having written that!! Any who..... I take some serious pride and self patting on the back for unending efforts to make her gain weight through all other challenges of her difficult path. She now eats an entirely gluten and casein free diet and has shown marked improvement in behaviour and attention span which is enough for me never to turn back. A treat for Makayla is some delicious ginger-ale!! There is just something about fizzy sugar water that makes this girls eyes light up and legs kick in excited anticipation of that first guzzle!!! Unfortunately often the guzzle is followed by some choking which signals me to say in a silly voice "wrong tube" followed by a now slightly red eyed girl smiling at her kooky mothers expression!
There had been talk about maybe Makayla needing a swallowing assessment done, but different reasons ( slew of other appointments, tests, and life) and not much concern over the issues it never happened. However one month ago, Makayla became irritable and began pointing, and pulling at her throat, then after spiking a fever and becoming lethargic we took her to emerge at McMaster where they gave her a chest and throat x ray and made a referral for her to have a swallowing and upper gastrointestinal study done. Last week she had the first test done where she had xrays taken while she ate and drank with barium mixed into her food and drinks. Honestly the test took so long to get started Mak was for once happy to actually cooperate because she was so hungry!! I had very little expectation of them finding anything as I suppose I can contribute this to the ridiculous amount of tests that she has had and all caming out with absolutely no helpful results. However for once when I was least expecting it their was obvious aspiration taking place. That's right every time Makayla took a drink part of the liquid went down her airway (wrong tube) and straight into her lungs ( wrong organ). The odd thing is Makyala did not cough or choke once during the test meaning she was silently aspirating, the scariest type of all because there was no way of knowing. So the lovely OT tried thickening the liquids with worsening of symptoms and then a little thicker with worsening again. Often thickening of the liquids solves the problem! But that was not the case, so what next then you may ask. Makayla's name was put an urgent list for surgery to have a GI tube put in. A tube literally sticking out of her stomach where she then will receive all future liquids in hopes to minimize damage already done to the lungs. Talk about SHOCKER!
At this point she will be able to continue to eat solid food but will be closely followed by a team of doctors in case anything changes. She may also have to undergo further testing to see if she is having problems with severe reflux as aspirating reflux is detrimental to the lining of the lungs. The news has been hard for us to hear and sad for us to accept, not just because she has to have surgery and will now have to deal with the care for another medical issue but because she has been suffering for a long time, possibly her entire life and unable to tell us! We are lucky that she never got pneumonia (possibly a small miracle unto itself) or a chest infection she was not able to recover from because her lungs were to tired from working overtime for so many years. We hope that this will lead Makayla into a new phase of life where she will be able to thrive a little more because all of those precious calories will be going to the right place! Now here we go down another road full of bumpy rocks! So next you sit back and enjoy a ginger ale kick your legs a little for Mak who has sipped her last sip of the good stuff! Until next time say a little prayer for us!
