At this point in time, Kiran is not scheduled to have a heart procedure. We are still monitoring his heart function closely, watching for the numbers that will tell us it is time. Agreed upon plan of care, there, is to really let his body show us he needs intervention. No panicked early starts, because we want to minimize the total number of heart procedures he will need during his lifetime.
The surgery my last post is referring to is “just” a gland removal. I am realizing and grappling, as I write this, with the ridiculousness of that descriptor. Just. Truthfully, as evidenced by my inability to fall asleep last night, any surgery is not “just” ….
But thankfully, it’s not his heart I am talking about.
Kiran has had excess drool most of his life. Certainly for as long as I can recall. He doesn’t manage it well. His swallow isn’t very strong. We soak through masks, bandana bibs, or shirts frequently because of this. We also think it may increase his difficulty with eating orally.
This past fall, he underwent a Botox procedure, where Botox is injected into the parotid glands and submandibular glands, 4 of the 6 main salivary glands we have. This is a temporary management to see how Kiran would do with less saliva production.
We noticed a difference. Many people, including teachers and support staff at school, family, and respite care providers, noticed a difference. It made the drooling more manageable and increased his desire to drink his thickened water. The effects started wearing off after about three months, as expected for this procedure.
The otolaryngologist is willing to repeat Botox procedures up to three times before she strongly suggests gland removal. However, with Kiran’s medical history and the amount of times he has to utilize anesthesia, we want to limit that. Seeing the progress Kiran had made with the Botox made her confident that removing the submandibular salivary glands would improve his quality of life in this area.
And I agree. Minimizing procedures is always the way to go, especially when the medical specialist states that is the path they would take if it were their child.
So we have a date on the calendar: April 4th. And I have the packet of those damn pre-op wipes to use after his shower the night before surgery.
We see cardiology again on March 22nd, so it’s possible something will come up and this entire plan will need to be recalculated. But I’m hoping for heart stability and continued waiting on that front. Please join me in that hope.