Brief review of "the odds":
Chance of having Barrett's heart conditions: 1 in 2 million.
Doctor's prediction that he could recover from heart failure, as presented at 2w old: "it doesn't look good"
Now that he is stabilized, there is a 30% chance that he will fully recover;
70% chance that he will need more medicine, heart transplant/surgery, or worse.
... But guess who beat these odds??
I think this is the happiest post I have ever written!We went to the cardiologist today for a follow up visit on Barrett's SVT and cardiomyopathy.
|Not very happy about all the tests, |
but the stellar results were worth it!
He is likely to recommend that Barrett be discharged from continuing care!
Do you know what that means??
:: No more scary heart medicines with mean side effects
:: No follow up appointment
:: No need for heart surgery when he turns 5
:: It is probably okay for him to taste chocolate, which contains caffeine. He may even be able to have cold medicines one day in the future (cold medicines are a risk for Barrett because they usually accelerate your heart rate).
|Last heart monitor!|
For the most part, he will be treated as a
normal little boy
I honestly cannot describe the way it feels to type those words.
Barrett has been through so much in his short life -- from a grim diagnosis of heart failure that the doctors thought could not be overcome, to a virtual discharge from cardiology care -- it makes my head spin.
I'll never, ever forget the way it felt sitting in the hospital conference room as the doctors told us to prepare to say goodbye to our new baby.
But more importantly, I will never forget the rushing relief when his condition miraculously turned around.
|A week or so later, propped up in his hospital bed|
Barrett's journey has taught us to
never take a single second with your baby for granted.We only have our babies for a short while, its like they are on loan to us from God.
Right now, we are the center of their world. But one day, a parent's opinion will become less important, and even uncool. They will become independent; they will grow up and move out. They will start families of their own, that take on their primary focus. These are good things that I want for my children.
Or, as some parents have learned, a child can tragically be taken away too soon. Your world can change at a moment's notice, or sometimes without any warning at all.
Regardless, one thing is certain....I'm sure I'll miss these days when they are gone.
In a way, Barrett's ordeal is a blessing to us because we now cherish moments that may otherwise feel mundane.
Bath time...singing lullabies....reading books....running at the park....blowing bubbles....
We are over the moon that Barrett is doing so well. It is hard to believe how completely -- and repeatedly -- our prayers were answered.
After all he has been through, I will probably always temper my optimism with a healthy dose of caution. But right now, I am overwhelmed with gratitude and
it feels so good.I love you Barrett.
Thank you for teaching us so many valuable lessons.