Thursday, April 23, 2009

Scratching the Surface

I hate medical research. Big words, lots of Latin(I sucked at Latin in high school) run on sentences and lots of contradictory information. My wee, overtired and rusty gray matter isn't used to all this smart people stuff. It's been awhile since I have had to use it for that purpose. And while I have amassed a number of degrees in my lifetime and am licensed, a scary thought, to practice all kinds of things here in my state, the big fat D- I got in anatomy my freshman year of college pretty much says it all when it comes to my ability to understand, let alone perform, medical procedures. And that is as it should be. Those who can, do, those who can't, teach and those who really can't, are patients, or in my case, the mom of a patient.
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

What does luck have to do with it?

Many people in the past few days have said to me how lucky I am that what happened with Cason happened the way it did. Meaning it happened at the doctors and that I saw the hives when I did, because without a doubt if I hadn't and had instead, just put him in the car and drove home, he would have died in the car. He would be dead now. I physically shrivel at the thought.

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


It was supposed to be routine. I actually didn't even worry before. I never even thought of sensitization. What I did think of was that he had already had all of these shots before. I had researched vaccinations like a crazy person before his first shots. We had declined the Hep B in the hospital when he was born and weren't going to let him get it until he was older. We declined the r.ot.a.virus too. It's too new and its adverse effects were still being investigated. The last r.o.ta. vaccine was pulled from the market because it was causing babies intestines to telescope(intesusseption). So we only went with the 'routine' vaccines that had been on the market for years, well tested and for the most part(and of course that's the line we glossed over) safe.

I have had many conversations with our ped about shots. I even brought in the article that had convinced me and the husband not to go with the Hep B shots, for my ped to read that day. That day I also told him, when the time came, I wanted the MMR shots given individually, not bundled, especially given Casons reaction to eggs and nuts when I eat them. Which I had stopped doing because he reacts(eczema flares, gas, rashes) so clearly to them.

I felt good. My mom and my daughter were there. We were laughing with the doc about benign things. We told my daughter how we were going to look away when Cason got the shots and then as soon as he started to cry we would all come and hold him and comfort him so he wouldn't think we gave him the shots only that we were there to make him feel better when they were done. It was over in a flash. The nurse lightning quick with the four sticks. I had him in my arms and his crying lasted only a mere moment and he was back to smiling at his sister and grandma. We dressed him and put him back in the car seat and strolled him out of the exam room. Stopped at the front desk to pick up a prescription and copy of the bill for my insurance. It took the girl longer than it should have, she was distracted. We left the office and walked out to the car. As we were saying our good byes to grandma, I looked down at Cason to pick his car seat up and put it in the car. His head was covered in hives. I told my mom. For a brief moment it didn't register, what was happening didn't click. My mom asked me if I was going to take him back in. Yes I said, we should go back.
In the elevator I took him out of his car seat. I went ahead of my mom and daughter to the office. I told the girl at the front desk, he's having a reaction to the shots, get the doctor. Another doctor came out and started to look at him in the hallway. She didn't know we had just been there. I remember her starting to tell me in a clinical way what they look for and I interrupted her saying we had only just gotten the shots a few minutes ago then I told her again to LOOK at him, he's not right. He's turning red, he's covered in hives and then she took us to an exam room. She started to listen to his breathing. He felt different in my arms. Heavier. My doctor came in. Now everything gets fuzzy in my memory. I can recall snapshots, not sequence. because here is where I watched my son turn blue. His lips are blue I yelled. He's not breathing I yelled. He's not crying anymore. Doctor Ped HELP HIM I yelled. And then, the image that is forever seared into my brain, my beautiful Cason, turned gray, went limp, eyes rolled back and I thought he was dead. And in my head the voice said, "That's all I got. That's all I got with him. 4 months. And now he's gone." I felt hollow and empty. I felt like Alice falling down the rabbit hole. Things were spinning, the room felt distorted and at an angle. I can't even remember if I was holding him or the doctor was. I can only see his lifeless body, dusty colored, hovering over the exam table. And then I know the doctor had him, he turned him over and rubbed him hard and Cason cried. And I shouted at someone to call 911. There were other people in the room I don't know who. The other doctor. My doc said to give him Benedr.yl. The other doc said get the epi pen. They did both. The paramedics came. They hooked him up to heart and breathing monitors. He was on oxygen. They wanted to take him to, I wanted Children's. They told me the other was closer. They decided he was stable 'enough' to make the farther trip and we were loaded into the ambulance and taken to Children's. The paramedics kept reassuring me of his breathing stats the whole way to the hospital but I knew he was deteriorating. I could tell by looking at him. I kept saying to him, "Don't leave me Cason, I love you Cason, stay awake Cason, fight Cason, I love you Cason, I love you Cason, I love you Cason."

When we got to the ER my husband was already there. My mom had called him. Cason was bright red and swollen. They put more oxygen on him and a breathing treatment, they put a big needle in his head and gave him a bunch of meds. Steroids, more benedr.yl, other things I can't remember. They had another epi pen standing by. I listened to the monitors, watching the numbers. Having an asthm.atic child, I know how to read the numbers. At some point my husband grabbed me and held me. I cried. We waited.

It took about an hour before the crush of medical people left the room. That's when I knew he was better. The numbers were stable before that but no one left so I knew they were still worried about a secondary reaction after the drugs wore off. After another two hours we were admitted to the hospital.

After two days of no sleep and lots of drugs, we came home.
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.

Thank you to everyone who has offered help and information. I was well armed with data when the allergist came in to consult with us in the hospital. And it made a huge difference to know so many were holding us in your thoughts. A really big thank you to my lovely Aunt Becky for rallying the troops for me and for her ever lovin support the past few days. And to Coggy who kept me company over the wires. An unintended benefit of the time difference across the pond was that I could reach her at 2 a.m. when the hospital was quiet and I was freaking the fuck out and didn't want to wake my family who had taken over the kid duties at home. My other two were very happy to get to spend some time with their auntie who spoils them silly, even when there isn't a medical crisis.
I'm off to hide under the covers for a while. Maybe a long while.

Friday, April 3, 2009

Need Some Good Lovin' Here

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.