A couple of days ago, I celebrated the big 3-9. I knew quite a while ago that while this year’s aging was bound to be memorable, and my suspicions were quite spot-on, as it turned out to be both a blessed and a blessed day (see my earlier post on this dual-meaning word that sums up life pretty well, especially here in the ICU.)
My big birthday gift this year was that Giacomo had his swallow study to determine if he could attempt to eat or drink anything safely. Though he’s seemingly been doing great with our trials of small sips of water this past week or so, once they took a closer look with video X-ray, things did not look so good…as in significantly worse than the last time he had one done in September 2018. That study showed his swallowing had gotten so bad that he: A. Didn’t realize that large of food residue was left behind on the back of his tongue that he thought he had swallowed but was now just hovering over his airway, and B. Even when we told him to swallow and he thought he was, no movement occurred, showing that, neurologically, there was a breakdown in communication between his brain and his swallowing muscles, classically seen in myotonic muscular dystrophy and other neurological disorders.
With this most current swallow study, all that same stuff happened, in addition to our greatest fear—-that food that was just hanging out on his tongue, unbeknownst to him, didn’t just stay there and eventually slide down the esophagus but instead made its way into his trachea…AKA: aspiration. For lots of people, a little aspiration happens on the regular, you cough it out and/or your healthy lungs work it out, and nothing more comes of it. For others, something does come of it–a little sickness called pneumonia, which can be treated but can also lead to further complications. And for folks with myotonic dystrophy, aspiration pneumonia is the worst nightmare, as it is the cause of death for 1/3 of all people with the condition. So, naturally, you can see everyone’s concern, and their abrupt ending of the swallow study once it was noted what was happening.
While he is seemingly fine at the moment from a medical standpoint, from an emotional standpoint, I think he’s less fine. Okay, that’s a lie—I am less fine. Even though he has been fantasizing about fish sandwiches, HE took the news that he can’t eat anything and may not be able to even have water at this point incredibly well. He didn’t get upset as he watched the video of the swallow study incident himself because I’m nearly certain he knows the dangers of him aspirating and getting pneumonia. He seemed to understand me very much as I explained that our top priority has to be him breathing first, and eating and drinking–safely– can come later…and that there IS a later to try again. He can continue to practice (assuming the pulmonologist will let him try drinking water after this whole aspiration thing,) get his lungs and breathing muscles stronger, and take another shot at swallowing later. While his feelings may change once all the docs and the speech-language pathologists weigh in on things, at this point, I am just feeling grateful that there was no sadness, no tears…from him.
I, on the other hand, am super sad for him and have shed some private tears about this potential HUGE life-altering bump in G’s road because even though I told him the truth about trying again in the future, I am not positive that we will have different results, given the fact that he was already heading down that “Aspiration?! No-Food-For You!” path. I feel horrible that this guy has endured so much to improve his quality of life, to align his jaw and teeth in an effort to increase his chewing ability, only to have his ability to safely swallow that theoretical chewed food become impossible. We shall see how this all pans out, but at the moment, I am in the state that has perpetuated G’s hospital stay–cautiously optimistic. Very cautiously.
With this huge blessed (as in rotten) part of my birthday, I was also quite blessed (as in fortunate) to have it bookended by visits from a lot of my favorite people, starting on my birthday eve when one of my oldest friends, Megan, surprised me by stopping by with a gift from her and all of my other oldest friends (shoutout to my other girls, Jess, Hannah, Erin, and Jenny!!), which also then forced her to get roped into my nightly routine of drinking tea and eating chocolate, as we chatted for over four hours about life, trauma, healing, and happiness. Right after G’s swallow study, two of my life doulas, Judith and Marion, arrived with their usual kind hearts, open arms, unconditional love, along with some games that one of them had picked up at a toy fair, that provided a much-needed distraction and brain workout for my guy and me.
To round out my day of highs and lows, in order to end on a high, truly blessed note, Gigi came with my three littlest offspring.
The kids were able to play together in a way that they hadn’t since this hospital–as he becomes increasingly disconnected from tubes, IVs, and medications, Giacomo (along with his pulse oximeter) was able to actually climb up the playground equipment to play “camp” with his siblings, and I think the look on all of their faces pretty much sums up how blessed we all feel to be able to play together once again. Lastly, my dear pal, Jill, graced us with her presence, plus some sparkling water, gummy bears, and new bulbs for G’s salt lamp night light to get rid of all the negative energy in this place. Jill also played the role of sneaky camera girl, capturing this moment of laughter between Gigi and me, while the kiddos were engrossed in my birthday big feature, Monsters vs. Aliens, showing down in the End Zone play area. And though I often use the line, “If you don’t laugh, you’ll cry,” when describing my attitude towards our crazy life and all the events that occur it in, I’m pretty positive that this was moment just pure, blessed laughter, enjoying having my entire family around me on this very memorable birthday.