“If you have your health, you have everything”, as the saying goes. Mahatma Gandi is quoted as saying: “It is health that is the real wealth, and not pieces of gold and silver.”
Last week I blogged about Bryan’s financial woes. When put in “Gandian” perspective, this week’s health concern far outweighs the monetary issues by a long shot.
Bryan has always had health issues. This is his reality. Many are a result of having Down Syndrome. Some, perhaps, are hereditary. His first surgery was at six months. His little blue eyes were always matted shut every morning as I applied the warm washcloth to them so he could see. To solve the problem, he had a tear duct probing early on. This was followed by yearly sets of myringotomy tubes to help clear the ever-present fluid build-up in the Eustachian tubes. We had learned that good hearing equals good speech habits and we knew Bryan would need every advantage in that arena.
A larger T-tube inserted when he was older to lessen the frequency of surgeries ended up creating a hole in the eardrum which THEN had to be surgically fixed by a tympanoplasty – brain surgery. Add in a tonsillectomy and adenoidectomy and now you know why Bryan was scared of and obsessed by doctors and hospitals at an early age. CHOP (Children’s Hospital of Philadelphia) became a familiar place, but was wonderful in the way it made surgery less scary and more palatable. He could always bring his favorite blanket and stuffed animal into surgery with him and got to pick his flavor of “gas”. I remember traveling up I-95 post-surgery with little Bryan strapped to the car seat, his breath smelling of the cherry flavor he always chose before going under. Meanwhile, I was praying hard he would not get sick in the car from the anesthesia effects.
Fast forward through multiple mental health issues and their resulting doctor visits gaining diagnoses of ADHD and depression with possible OCD during the teenage years. The counseling continues today.
Also, as a teen he was diagnosed with Atlanto-occipital instability. There is instability within the spinal region between occiput and C-1. A blow to the head could sever the spinal cord. No contact sports every again. Forget skiing, soccer and horseback riding.
For several years recently, Bryan’s health problems have revolved around physical health issues due to being over weight and eating a poor diet. His cholesterol numbers continue to climb. He has GERD, Barrett’s esophagus, skin eruptions, gout and, now, some other issues are beginning to come to the forefront.
This past month have seen an ultrasound and cat scan. Bloodwork has hinted at a problem with the kidneys, bladder and liver. The cat scan report was encouraging regarding kidney and bladder. It found the liver enlarged and fatty. From what I can ascertain, this is not good. The cat scan report stated the finding of a “significant abnormality”. What does that mean? The doctor’s office said there is no need to come in early to find out. Keep the November appointment. I’m trying hard not to fret!
Maintaining Bryan’s optimal health from a distance as he lives a half-an-hour away from us is quite tricky. Each time a new roommate comes on board, the mantra of his maladies must be reiterated and enforced. Hard to do when you don’t live there. I try to gently educate, come up with a diet that addresses his myriad of health concerns and pray that healthy habits are practiced in the apartment and in the community when he goes out to eat.
And, so, I hope that at his November appointment, his doctor will use tough love and stress to Bryan the need to want to be healthy on his own, living on his own. I know he’s trying. I see the receipts from his take-out purchases. The side of broccoli along with a cheesesteak. His attempt at healthy eating. But that may not be enough anymore.
We may have to play hard ball, getting all of the members of his team onboard to encourage healthy habits. Not easy, but we press onward in the hopes that, someday, his health woes will lessen.