Thursday, April 23, 2009
And even though my friends really do call me in times of medical need for a quick armchair diagnosis of many ailments, sadly I am not licensed to prescribe fun drugs or any for that matter, to anyone. I suppose the state knows I would hand out Vico.din like Halloween candy if given the chance. And the world would be a better place for it I assure you. But that's another post.
This whole allergy/anaphylaxis thing sucks. Bottom line is the docs want to find out why and what made Cason react like he did. So do I. But not at any risk to him. And guess what I have heard so far.
From my pediatrician, who I adore: "Cason isn't a good candidate for scratch testing because of his anaphylaxis." (Scratch testing is where an allergen is placed in a needle and then the patients skin is scratched with the needle to see if it reacts to the allergen) (Scratch testing can result in anaphylaxis).
Later that day from the allergist: "I want to scratch test Cason with the actual vaccines he got, diluted way back, to see if we can illicit a reaction."
From me: WTF?
Allergist then proceeds to use several phrases that generate a panic like response from my body. Phrases such as, 'highly unlikely", "very rare", "we've managed anaphylaxis in our office before", "we're equipped to handle that type of emergency here". He says these things to a woman, me, who in the past two and a half years has had a perforated uterus during a "routine' D & C and had to be rushed to the hospital because of this "rare" complication, a stillborn son, while not as rare as I thought, I later found out, it sure as hell wasn't on my radar either, and a son who according to the literature I've read, had a one in a million reaction to his vaccines. How am I supposed to take any comfort in a doctor telling me what he wants to do might, could, may, possibly, send my son back into a second episode of anaphylaxis? And I ask him, can you do it in a hospital and admit him for two days because anaphylaxis can take up to 48 hours to occur after an exposure to the allergen. He says that would mean he would have to stay at the hospital all day and he doesn't see how that would work for him. And I am in my head saying I don't see how exposing my 5 month old baby to something that can KILL him and just taking him home and watching him to see IF he has a reaction, works for me. Out loud I am trying to talk over the lump in my throat and I tell him just sitting in his office for a few hours for monitoring doesn't seem like enough, not near enough, precaution to me.
He tells me he understands my view. He knows it must have been very traumatic for me. He has NO FUCKING CLUE. I don't even know how traumatic it was for me because just thinking about it makes me want to vomit. The idea that I could have to watch it happen again. I can't even go there. The idea that it might be an acceptable risk to him and that he isn't willing to do anything more to protect against it than just watch and wait. Fucking nuts.
Allergist is going to talk to his partners about what I asked for. I doubt they will agree. My pediatrician thought it wasn't an unreasonable request. But of course, he saw the reaction first hand, the allergist didn't.
There are more blood tests they can do but none of them will conclusively tell us what happened. There is a theory that it was gela.tin, a binding agent in the DT.A.P vaccine but without eliminating the others we can't know if it was that or a combination of the vaccines or what. And if we want to have Cason vaccinated we need to know as much as possible about him and his allergies.
Which is why I am doing this medical research stuff. It is also why I need a vico.din. Damn D- in anatomy anyway.
Wednesday, April 8, 2009
But for these past days I have been thinking, I'm not lucky at all. I had to stand in a room and watch, I thought, my baby die. Even though I know now he didn't die, I can't change the feelings I had at that moment and I can't change the memory of it either. The searing moment when I implored my ped to save my baby, when he looked into my eyes and forcefully said, "He isn't going to die, Mrs. K., I won't let him." And I looked right back and told him, "You can't know that, you can't promise me that." Because I know too much. I know there are no promises or guarantees and I knew, even though he was calm and direct in his actions, that he too, even if he will never admit it to me, was scared shitless that my baby boy was going to die in his office right in front of us that day. And to me, that didn't feel lucky. And even after, when Cason was ok and we were home, I still didn't feel lucky. I felt angry and pissy that I had to be that scared again. That my family had to go through it, that I watched my mom age a couple decades overnight, That I saw my dad cry, again, over me and my child. That my older son once more asked if his brother was going to die and that I could see in his eyes the lost confidence in the world doing right by us.
It just didn't feel lucky. Not one bit. To me lucky would have meant not having had to live through any of it. Lucky would be getting vaccines and going home without a life threatening and life altering medical crisis happening before I got there. Or at least that's what I thought until this morning.
When I read this over at Aunt Becky's place.
And now I have been humbled back into my place and reminded just how absolutely fucking lucky I am, we were.
Cason is home, healthy. Severely allergic, but healthy. And as my husband says, we can deal with this. And he is right. I don't know how I would ever have dealt with the other outcome. The final, rip your heart out and stomp it into bits, your child is dead, outcome. The outcome that the Spohr family is living with at this very moment.
And I curse luck, fate, charma, God, whatever or whoever it is that controls the world, that manipulates our lives like puppets on strings. I don't want to know about these things. I don't want to know that not everyone gets what they deserve. I want to pull the covers up and hide away from all things dark and frightening. I want to shield my children from fear, from knowing hurt, from tears. And then, when I stop to breathe I tell myself, that is what life is. It is uncertain and scary and unfair and messy. It is joy, it is elation and it is euphoric. It is what it is.
And it makes me wonder, what does luck have to do with it?
Sunday, April 5, 2009
And now we begin to unravel the mystery. Which I will write about later. But to clear up some confusion, my docs had heard of this type of reaction to the vaccines. None of them had seen it. Not to the shots Cason had. Not the Children's ped who had been there for 15 years either. They know it is a 'known' risk of any vaccine but none of them had actually seen it in a 4 month old with the four shots Cason got. So we have to find the component that triggered this. And until then, no more shots for Cason and we don't leave home without an epi pen.
Friday, April 3, 2009
Okay, so here I am, Becky from Mommy Wants Vodka hijacking my good friends blog with some news and a plea for some help, oh wise Internet (why yes, I am buttering you up).
Yesterday k@lakly took Cason into his 4 month well-baby visit and part of that visit is the ever-dreaded shots (Amelia got hers this week and it about broke my cold, shriveled heart). Today, he got diphtheria/tetanus/(and)pertussis, Haemophilus influenzae type b, polio, and prevnar.
Yesterday, he also ended up in anaphylaxis and stopped breathing. His momma (thank GOD) got him to the hospital in time and he’s stable now (thank GOD).
But this has stumped the doctors who have never seen anything like this before so his poor momma, k@lakly, asked me to post to the Internet to ask if anyone had seen this before.
So, wise Internet, rather than ask you to evaluate the size of my ever-widening ass, I beg your help. Has anyone, ANYONE heard of anything like this? Send her an email at kalakly (at) yahoo (dot) com or leave a comment here. Repost this, whatever it is that we can do to get this around.And can everyone, EVERYONE send poor Cason and his momma some prayers and love today? They're in the hospital where she can check her email and her blog and I'm sure she could use all the kind words you all have for her.