Sunday, November 25, 2012

Medical Maintenance

(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.

Sunday, November 18, 2012

Fall 2012

We had a very eventful Autumn, and it was GORGEOUS the whole time. We started off September with a trip to the State Fair. Going there is always a treat... filled with surprises. Jack impressed the marines with his pull-ups and we also exposed the scam of the oval-shaped basketball hoops. Also, Jack walked away with a GIANT stuffed red pepper toy after Keisha told him to lift up his shirt and show the carni his scar. It worked like a charm- if your goal is to carry around a humongous stuffed pepper all night long..

The fall presented us with beautiful leaves and cool nights. Halloween was an ideal temperature and we had a fun night trick-or-treating with friends.




(It is only a matter of time before we are out on the street trying to send valuable messages to teens..)

(Jack was a super scary vampire. Note: he is not wearing any white face paint.)


The mountains provided us with many colors and superb backdrops for photo shoots. This year in particular I felt the leaves stuck around for a decent amount of time. I loved capturing the brilliant colors.
 (Little Cottonwood Canyon)



 (Tanner's Flat)





My sweet grandma passed away in October. It was unexpected but also a relief as she was in great health and ready to move on peacefully. We celebrated her beautiful life and shared so many wonderful memories. I feel lucky to have had her in my life as much as I did. What a spectacular grandmother she was.


Jack started the first grade and has loved every minute of it. He was a wonderful teacher and has made many new friends. He did have an unfortunate accident after the big snowfall in November and slipped at recess and hit his head, resulting in a concussion. It is always a scary threat of possible interior bleeding as Jack is on a daily aspirin and bleeds very easily with trouble clotting. Thank heavens the CT came back good and he bounced right back to his normal self. He also lost TWO teeth and is about to lose two more (via the dentist...) It's been quite the eventful few months.
  

                                    

Winter is upon us and Jack has taken a great liking to Tchaikovsky's "Nutcracker." He listens to it each night as he falls asleep, preparing us early for the Christmas season.