Our poor, sweet girl has entered back into the world of genetic testing. We are finally looking into reoccurrence rates to somehow try and understand the likelihood of Eden’s heart condition developing in future children. As you know, she has been through extensive testing already when we were trying to learn why her HCM developed and if it would happen again in a new heart. We came up empty handed and it was determined that she did not have any of the suspected syndromes or metabolic diseases that would have disqualified her from receiving a transplant. Now we are looking into gene mutations that are known to be hereditary as well as a few other conditions that have been discovered since our last round of testing.
I hate every part of these testing processes: the scouring and measuring of her every body part, the labeling of her abnormalities, the painful pokes, the inability to explain it to Eden, the wait…. the terribly long wait…, and then the dreaded phone call. Ugh.
Why didn’t they just test for everything when they had her blood the last time, you ask? Good question. Actually, genetic testing is extremely sensitive and many tests require different rules for the way the blood is drawn. They also seem to need A LOT of blood and we couldn’t possibly take it all at one time. In fact, Eden has such small veins that it is difficult to get any blood at all, not to mention the screaming and crying that keeps her favorite nurses at bay. She doesn’t kick and fight, actually she is so irresistible with her “please… all done” and “no thank you, no more” whimpery type cries that any phlebotomist with a heart at all just melts in front of her.
In the end, they poked her a million times, they “blew out” a vein, they didn’t get enough blood, and we have to start all over again when her arms (and emotions) heal. Eden already seems to be over it, but I still need some more time to recuperate. :)
Good thing they sell wonderful homemade gelato at The Children’s Hospital. We shared a scoop for breakfast and all was well again.
I hate every part of these testing processes: the scouring and measuring of her every body part, the labeling of her abnormalities, the painful pokes, the inability to explain it to Eden, the wait…. the terribly long wait…, and then the dreaded phone call. Ugh.
Why didn’t they just test for everything when they had her blood the last time, you ask? Good question. Actually, genetic testing is extremely sensitive and many tests require different rules for the way the blood is drawn. They also seem to need A LOT of blood and we couldn’t possibly take it all at one time. In fact, Eden has such small veins that it is difficult to get any blood at all, not to mention the screaming and crying that keeps her favorite nurses at bay. She doesn’t kick and fight, actually she is so irresistible with her “please… all done” and “no thank you, no more” whimpery type cries that any phlebotomist with a heart at all just melts in front of her.
In the end, they poked her a million times, they “blew out” a vein, they didn’t get enough blood, and we have to start all over again when her arms (and emotions) heal. Eden already seems to be over it, but I still need some more time to recuperate. :)
Good thing they sell wonderful homemade gelato at The Children’s Hospital. We shared a scoop for breakfast and all was well again.
(By the way, if I had to lay on an examining table to have my body's abnormalities measured and labeled I think I’d go jump off a cliff. It’s like some bad sorority dream. At some point, this can’t be good for her psyche right?)
1 comment:
Sorry you had to go through this, we know from experience that it stinks. They always have to make some comment about Jackson's "large" head. Would love to hear more on your thoughts about the "have another kid" descision as we are right there with you. Eden is so adorable and we love reading about her. Jackson enjoyed the fairy wing pictures! Thanks for sharing with us.
Nicole Altieri (Jackson's mom)
Post a Comment