I wrote my first blog entry in August 2015 while sitting in a Dublin hospital room watching over my son Brendan Bjorn. I write this entry while sitting in a Dublin hospital room watching over my son Brendan Bjorn.
Once again, his body struggles to accept the specialised formula which keeps him alive.
Once again, doctors devise a plan on what to do, and a plan B if plan A doesn’t work.
Once again, another medication (erythromycin) is added to his daily cocktail, this one to hopefully help gut motility.
Once again, he’s gone days without formula for nutrition and is losing weight.
And once again, the fragility of life smacks me hard in the face – as if I could ever forget.
Except it’s not just a feeling.
We’ve been here before.
Like August of 2015, tests have been run, and run again, and all have come back normal. There is nothing we can point our fingers at and say “Ah ha! That’s what’s wrong and here’s how we fix it!” No. Instead it comes down to the neurology of the gut. Did you know the gut is called “the second brain” in the medical world because it has 400 to 600 million neurons? Combine that with a child who has severe neurological damage, and you get a brain and a gut – seemingly conspiring – refusing to send out the correct signals for proper gut motility, digestion, absorption.
Once again, his body is betrayed by its own self.
Today we will try to re-introduce formula, at half-strength, into his gut via his peg. I will hold my breath while watching over him, ready to jump if he yet again begins to gag and not tolerate the desperately needed nutrition. And, I will breath a tremendous sigh of relief if he does indeed allow this feed to stay down. The next step would be full-strength formula, and the step after that…home.
In August 2015 he spent 19 days in hospital. The last thing I want is a repeat of that. We’re on day 6 this time.
No more deja vu, please.