I wrote to you back in January on my son's 18th birthday. What an amazing day that was after all he had been through. It was just the beginning of our life with CDH however, and I thought perhaps an update would be in order.
Part of turning 18 for typical kids means things like drivers licenses,
voting for the first time, choosing a college or a first job. Turning
18 for a child like Sean means vastly different things. We celebrate
that he is still with us (and he graduated high school in May!!!), but
we have had some difficult decisions to make as well.You see, due to Sean's developmental delay he cannot be independent. That meant we had to go before a judge and ask that we become his legal guardians, declaring that he was unable to care for himself, physically or mentally. It was a long and emotionally and financially expensive process, involving lawyers, for us and for him, the department of health and welfare, testing to prove that indeed he is incompetent to care for his own needs, and letters advocating that we as his parents for his entire life were the best choice to continue to care for him.
As if that weren't enough, his doctors were no longer able to care for him once he turned 18, so we had to find new physicians who were willing to learn about his unique healthcare and emotional needs, as well as were willing to work with myself as his guardian. Most adult doctors are used to working with the patient directly and have a difficult time dealing with a well informed and very pro-active parent participant on the medical team. I consider myself to be equally important to his team since I am the only one who knows his complete history, so it essential that any new physician be willing to communicate directly with me. Sean can't handle discussing his medical issues, so if there are any changes that need to be made or information shared it has to be through me, not him. It is something we continually work on, but it is a very slow process given his emotional age.
The good news? He has been pretty healthy this year! No
hospitalizations in 1 1/2 years (until this week) and last month after
18 years he was able to take in all of his nutrition through a g-tube
instead of also needing IV nutrition (TPN). As for the hospitalization
this week. We are currently on a long planned and anticipated vacation.
When he was 5 Sean received a wish from Make a Wish, and we went to San
Diego to see the zoo, Sea World, and the Wild Animal Park. We decided a
few years ago that for his 18th birthday and graduation that we would
go back and re-visit his wish.... And added a few more fun animal
adventures to the trip (watching whales on Monterey Bay as well as that
well known aquarium, La Brea Tar Pits, Safari West).Unfortunately somewhere along the way he started getting a little sick. it started with a sore throat and his ears hurt when he swallowed. No biggie to most of us, allergies maybe, or a cold. But when his temperature started going up we were very watchful. Because of his history, and particularly because of that permanently placed IV line whenever he gets a fever of 100.5 or greater he has to go to the ER for labs, a chest x-Ray, and IV antibiotics. Sometimes he is even admitted for a few days. If he were to have an actual infection in his IV line it could require weeks of IV antibiotics, surgery to remove the line, he even had a long 6 week hospital stay at the age of 3 when we nearly lost him. This time fortunately we were just able to keep it to 7 hours in the ER and will be doing IV antibiotics from our hotel room. After 18 years we are experienced at it, but it does become a bit of a pain when you are trying to make memories. It is all part of our life with CDH, and with Sean, so we will do whatever we have to.
Today he is at the wild animal park with dad, hooked up to the IV antibiotic, mom got sick too (thanks for your generosity Sean!). He is a little Dynamo, and couldn't let a little thing like 3 hours of an IV medication 3x a day get in the way of seeing some of his favorite animals! Tube feeds are running extra hydration, he has an electric scooter to drive around so he doesn't wear himself out, a camera to take a ton of photos (he is averaging about 1,200 at each of our stops on this trip... I love digital!) and the smile he will bring back with him will be worth everything we had to do to get him there. Tomorrow I should feel better for our Sea World day and he can't wait to see Shamu. Life is good.
I would so appreciate it if you would seriously consider finding away to help bring awareness to CDH and children like my son. They so deserve the help. They are so precious, and fight so hard for everything...
Thank you,
sincerely,
Heidi Forney
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