(Jack, at Primary Children's Medical Center.
Left is 2009 while admitted, right is 2012 during a dentist appt.)
I get asked about how different life is now that Jack has had his final surgery and what kind of "maintenance" we have to keep now that he is "finished*," and what differences there are as opposed to a heart healthy child his age. Obviously, I have nothing to compare him to. However, I do know when we have stepped over the bounds of "usual treatment."
For example, last year I was pulled aside by a very kind dentist, one who worked at a pediatric dental office and he had the courtesy (and candor) to set me straight.
"I believe I am perfectly capable of fitting him with a crown and filling his cavities, but I must tell you I would feel more comfortable if he were in a setting where if the small chance anything were to go wrong, he would have the appropriate people and equipment around him to fulfill his needs. I'm quite certain you will find this is the case at most dentist's clinics.. "
What he was saying so delicately, was that no one wanted to touch a boy with such a delicate heart condition. If they were to use ANY anesthesia and something were to happen, they would rush him off to Primary's anyway- hence, we should just go to their dental clinic.
I completely agree, of course, but a regular visit to their clinic is $250. Thank heavens for Medicaid..
But they are absolutely wonderful there. The first time Jack went he walked out of the office with a silver crown and was convinced they never shot him with novacaine. They are quick, make the patient comfortable and have a way with their hands to hide most things going into the child's mouth. Not to mention the nitrous. Jack giggles the whole time in the chair. The major differences are that you are in a hospital, there is MORE equipment around you, and you are prescribed an antibiotic to take before your appointment to avoid infection. I'll take it.
Another form of maintenance that heart healthy children don't have to deal with is the aspirin. Jack takes 80mg every day to keep his blood thin and flowing freely through his complex anatomy in and outside of his heart. This makes for tricky clotting when he bleeds. There was the circumcision incident that I feel I would need his permission to tell on the world wide web, also when his baby teeth came out I had to pack some cotton in there for a bit before it finally stopped. Then there was the concussion that really got everyone concerned. Jack slipped on ice and hit his head at school. The concussion left him very bruised and he had some vomiting. So the hospital opted for him to have a CT to check for any bleed, because getting brain bleeds to stop while on aspirin can prove very difficult.
The test showed what they expected for a minor concussion, but no bleeds. I felt like fitting him for a permanent helmet and sending him back into the big, dangerous world, where his head must NEVER be touched and he can't EVER go to recess... or play dodge ball, or run....
But I supposed every parent, (heart healthy children or not,) must deal with the reality of having to send their children out into the world and risk what may happen to them. And this is only the beginning. So many heart mom's have their kids in sports or driving...or sent off to college. I'll probably be calling Jack every night for the rest of his adult life reminding him to take his aspirin.
Like Elizabeth Stone says, "Having a child is momentous. It is to decide forever to have your heart go walking outside your body."
*I like to think we are finished, however it has recently come to me that indeed we are not. This will be a life-long, constant effort to help Jack's heart sustain him. As posted here: http://hlhsbabies.blogspot.com/2012/06/q-as.html.