I hate to admit it, but there are times when we hope for the worst for Jackson.
No, I’m not a terrible mom. And, no, I’m not talking about those situations that are life or death or could cause true harm to our little man. But, from time to time, when it comes to hoping for one of two options – the better or the worse – we hope for the worst.
Just hear me out.
This past week, Jackson had a ‘gastric emptying’ study to watch how food moves through his stomach and into his intestines. Often, kiddos who have had pneumonia as much as Jackson could be dealing with reflux or ‘silent aspiration’, a condition where food is backing up into the lungs and airway but isn’t necessarily coming out of the mouth and showing as traditional reflux. Being as Jackson is fed into his stomach 24 hours a day, this was a concern for our pulmonologist and he wanted it checked out ASAP.
The procedure was awful. They strapped down Jackson to a table with tape and fed him through his g-tube at a rate he wasn’t used to. He handled it like a champ and, after a few minutes, was peacefully sleeping while the camera picked up the nuclear isotope that had dyed the milk and watched as it flowed through his system. Jackson’s nurse and I tried to decipher what we were seeing on the screen to no avail – faint flashes of white against an otherwise dark background that, somehow, were supposed to represent the flow of milk and tell us what was going on inside.
A positive result would have been a ‘bad’ outcome, confirming our suspicion that Jackson’s food wasn’t completely going into his intestines and was instead backing up into his lungs, causing the three (or is it four?) cases of pneumonia he has had in past three months.
It was the worst outcome. And it’s what we were hoping for.
This outcome would have explained so much. It would have given us a reason as to why Jackson keeps getting sick – a simple explanation that, while it would come with more questions regarding how to solve the issue, would have been a starting point for treatment.
The results were negative.
Jackson’s food was moving through his system exactly as it should, pushing from his stomach to his intestines without a problem. He even took the sizeable bolus, a feed given over a short period of time as opposed to continuously throughout the day, well and handled it better than our doctors would have expected. If anything, they saw ‘minimal reflux’, the kind or your I may have after eating a slightly spicy meal. All in all, he did great. And we were kind of upset about it.
This is great news for Jackson. It’s a first step in moving him toward a more manageable feeding schedule and, hopefully, transitioning to food by mouth at some point in the future. It means one less surgery – silent aspiration could have led to an additional procedure – and one less thing to worry about.
But, it doesn’t explain why he’s been getting sick.
A positive test would have been able to explain to us why Jackson was continuously getting pneumonia and, though the solution could have included surgery, would have provided us with a plan on how to fix it. Now, were back at square one, scratching out heads as to why a child with a seemingly normal immune system would continue to battle an illness over and over again to no avail.
We may never have an answer. Jackson, like many children with complex medical issues, rarely presents in typical fashion. Instead, he leaves little clues here and there for us to piece together like a puzzle where you have three-quarters of the pieces and absolutely no picture to go off of.
This is why, sometimes, we hope for the worst. Though the answer may not be ideal, its clear cut and straight forward and involves a path toward treatment. Sometimes, though we want it to be, the best case scenario isn’t always the best.
Now, what to hope for from this weeks MRI?