Monday I took Emily to the pediatric cardiologist. It was not at all what I expected. I heard a lot of phrases I didn't like.
You and your husband should take a CPR class.
Put 911 on speed dial.
You should purchase an AED (automatic external defibrillator).
Emily probably will not be able to play competitive sports.
If Emily faints, call 911 and start CPR.
I may be a total oblivious idiot, but I was shocked. All I'd heard previously was "there are some medicines that she will not be able to take." This is an understatement. The list is ELEVEN PAGES long. Ironically, it includes zofran which the doctors have insisted on giving for nausea which has not helped AT ALL and does not include reglan which does help and we've had to fight to get them to use.
This adoption has been so hard. I think the hardest part is the separation we have experienced in our family. No one ever warned that adopting one more might mean that we'd spend a lot of time with one parent and a child and the other parent with the other children. No one ever warned that we might spend most of our holidays not together as a family. That most of Emily's "firsts" would be spent in the hospital puking into a bucket. I've struggled with some bitterness. I've wanted to be the super adoptive mom that can say, "Thank you, God, that I didn't know about my child's special need because otherwise I might have chosen another route." I'm ashamed that I'm definitely NOT the person I'd like to be, especially the adoptive supermom.
But now suddenly I am faced with the very real possibility that my child could pass out and die.
I realize how deep my love is for my cherished baby. Yes, even though I'd occasionally like to clunk her!
Her doctor said, "Let's go ahead and try the CVS med, amitriptyline. We'll monitor her closely and I think the risk is low." The physical heart looks great. No problems. It's just the quirky electrical wiring that's a problem. For you medical types, Long QT.
So Tuesday night we started the med and today we went back for another EKG.
The kid is determined to drive us crazy.
The EKG was normal.
The doctor was all smiles and quite relieved.
So, as of today, here's what I heard:
The doctor suspects that she does not have Long QT. He will treat her for it anyway. We should still take CPR because it's a public service, but treat Emily like any other kid (who pukes, gets dehydrated, and winds up in the hospital). We do not need to get rid of our alarm clocks, turn down our doorbell, or avoid loud, sudden noises. We do not need to steer her away from soccer and toward non-competitive athletic endeavors.
Tuesday we double the amitriptyline dose. They'll do another EKG in two weeks. If all is well we'll increase the med again and do another EKG. If all is well, all is well. See you in August, doc!
They did genetic testing. In several months we'll have the results. There's a 20% chance of a false negative with Long QT.
It's been an emotional roller coaster. I guess I don't need to tell you about the gratitude and relief we felt. Personally, I'm sick of the wild rides and ready for a nice state park. With a beach. Emily would be happy for that, too. ; )
Thank you, Lord.