Ug. I'm not really wanting to re-live what happened, but I think it's important to journal these big experiences. So, here goes. It's been four weeks, so I should stop putting it off.
It was just a long, awful day. There's no way around it. Calvin was getting an endoscopy (scope of his esphogus, stomach and duodendum, along with biopsies of all of them) to see if he also had EOE (the disease Carter has). It was all the way up at Primary Children's Hospital--which is an hour each way. We were the first surgery of the day since Calvin is so young. We had to leave at the crack of dawn. While Calvin was getting his procedure, Claudy took Carter to get his blood drawn. A few weeks ago, after eating dinner he drank some soy milk. Even though he's had soy for over two years now, and scoped clean on it, he broke out in hives all over his face. He's never drank straight soy milk (other than a soy challenge when he was one)--the only time he really has soy is when I cook with soy sauce, which isn't straight soy and it's only a Tablespoon or so at a time. We were worried that maybe having so much at once could have caused a reaction, so, we needed to see if he'd lost his tolerance to soy milk. His allergist wanted blood work. We figured while we were already there that we'd have Carter do that too. Carter hates getting his blood drawn, and I was glad it was Claudy who took him while I stayed with Calvin.
We finally got home around noon and we were all pooped from the drive, getting up early and the nerves of having our baby undergo anesthesia.
Our plan was to eat lunch and put the boys down (and hopefully get a nap ourselves, since Claudy had taken the day off work).
Claudy was upstairs on the computer, and I ran to the bathroom. Claudy had a feeling to check on Carter. Within just minutes of him being by himself, he had found a Grandmother's Sugar Cookie that I had thrown away in the garbage, gotten it out, and presumably eaten some. Claudy said he found him with crumbs everywhere, Calvin eating some, and frosting on Carter's face.
Looking back--we should have given him the Epi-Pen right away. But, I will admit with some shame that I'm terrified to give it. I don't want to give it. I don't know anyone that wants to hold down a screaming little boy and stab a needle into their thigh and hold it there for ten seconds. And, looking back, I was looking for every excuse to not give it. We weren't 100% sure that he had eaten any of the cookie since we hadn't been there to view it. He might have only had the frosting--which is what he does with cupcakes. If so, the frosting may have had shortening and not butter--we're not sure since the label only breaks down the ingredients in the entire cookie. Based on the packaging, it had eggs, wheat and dairy in it. Three of his top allergens. Claudy immediately gave him Benedryl and I said we needed to head to the ER.
Now, I get why people call an ambulance. I just didn't want the hoopla and scare Carter if he hadn't eaten it, and if the Benedryl would take care of it (not to mention the huge expense). Plus, we live just a few blocks from a hospital. We rationalized that we could get there sooner. Again--probably stupid since an ambulance is equipped in case he crashes, and you get priority when you get to the hospital.
We parked in the ER parking lot and watched him like a hawk. By this point, the hives that had blown up all over one side of his face were really subsiding. He wasn't having any other symptoms and so we felt relieved that maybe it was topical, or he hadn't had enough to cause any serious reaction. We waited until it'd been an hour since he'd eaten it--most reactions happen quickly. Although, as we learned, it can still happen hours later.
Right when we were about to pull out, Carter was doubled over, saying his tummy hurt. We figured it was just his stomach reacting to the cookie. No big deal. Claudy and I even disagreed about whether we should take him inside, or go home to use the bathroom. I said we should just go home. Claudy said he didn't want him to go in his pants, in case it was explosive. I hemmed and hawed because Carter didn't have his shoes on (we'd RAN out of the house) and I didn't know where a bathroom was in the hospital. Claudy finally convinced me to take him, and boy am I glad he did!
As I was carrying Carter, he was like a rag doll in my arms. I kept telling him to hold on, not realizing that anaphylaxis was setting in. When we finally got to a bathroom, I looked at him and the hives were re-appearing! He was also gagging and acting like he was going to vomit. Boy was I glad we were already in the hospital! He also had huge patches of bright red skin. Not just a hive, but entire sections. His nose, ears, arm pits and genitals/upper thighs were flaming red. He wasn't able to go potty but was crying that his stomach hurt so bad.
I fled to the ER with him in my arms, since we were in the general area of the hospital. I was dismayed that there was someone in front of us. I kept debating whether I should scream I need help, or if I should be polite--again--the ambulance would have saved us in this regard.
Unfortunately, I don't feel that the hospital staff was acting urgent or taking us very seriously. When we got to the triage nurse I exclaimed "My son has known, severe allergies to wheat, dairy and eggs and he had a cookie with all three in them." I know it's hard to tell when you're the one in panic mode, perhaps they were trying to keep me calm, or perhaps they're not that familiar with the literature, but every second counts! I wasn't sure if acting hysterical would help them take me more serious or less serious so I tried to be calm but assertive.
I called Claudy to come inside at once, and we were escorted back. By this point, Carter was so limp, he was snorting/making a weird noise, he had hives on his stomach, his nose was now running and his eyes were rolling back in his head. They put monitors on him and I kept exclaiming "Are you going to give him epinepherine??" This is the medication that can save your life when you're having a serious reaction. I was dismayed that they said they had to wait for the doctor. I was on the bed with Carter, he was splayed out in my lap moaning from the stomach pain and they said, "We're watching his vitals, and they look OK." I felt I had to keep advocating saying, "He has severe asthma, it wouldn't take much for him to stop breathing." Your chances of dying from anaphylaxis go up if you have asthma, since it often cuts of your airway. It seemed to take forever for the doctor to come; when he did, he agreed he needed epinepherine. I thought they would keep some in the ER, but he said he had to wait for the pharmacy. I was about to explode. We had been there for what felt like forever (I didn't pay attention to an actual clock)...he was progressing--more signs and symptoms constantly and still NO gosh darn EPINEPHERINE! Meanwhile, they did start an IV, which Carter abhores--and he was screaming. "NOOO pokies! I already had pokies today!" My heart was breaking.
When they finally brought the epinepherine in and gave it to him his vitals went through the roof. I'm not sure if it's because epinepherine is adrenaline, or because he was so pissed he was getting poked again. Can you blame the poor kid??
Once he was seeming to respond to the medication and seemed more stable I called my mom to let her know what had happened. I had been strong up to that point, but when I went to tell her what happened my voice caught and I couldn't say a word. All I could hear was her saying, "Megan? Megan? Are you there?" I just started to bawl and told her. I tried to keep it short, as I could see Carter was looking at me and seemed worried that I was losing it.
I have since put in a complaint about the hospital's procedures and response to the anaphylaxis. While the staff was nice enough, I didn't feel that they had things in place to respond quickly. All medical literature points to the earlier the epinepherine is given, the more likelihood that you will live through the anaphylaxis. I felt that they were waiting for him to crash before responding quickly. I really don't know if I feel comfortable bringing him back to that hospital, which is unfortunate since they are the closest hospital to us. I am glad I spoke up. In the general letter they sent me in response to my complaint, they said the manager would talk to the staff and to the pharmacy. I was hoping they'd discuss whether I was incorrect in how I perceived things or not--I'm fine being told that I was just in Momma Bear mode, but it seemed like the same letter they send to everyone. Very generic. My allergist said if that happens again, to just give it to him from my own diaper bag. I wasn't sure I was allowed to give medication, once I was admitted to the hospital, but I realize how silly that is if my son's life is on the line.
As per procedure, we had to stay there for four hours for monitoring. You have to wait to make sure that it doesn't come back. Carter and I were exhausted and took a nap on the bed together. Two major things to both of my boys, in two different hospitals just spent me.
We were very lucky that our awesome Elder's Quorum President came and gave Carter a blessing with Claudy. That was a huge relief and comfort as well.
We learned so much from this experience. For sure, next time we will give him the epi-pen and not wait.
Afterwards, we had a serious talking-to with Carter. We went over (as we have, many times before...but perhaps it stuck this time) that he CANNOT eat anything without asking us if it's OK. Or, unless we hand it to him.
But, at the same time that felt completely ridiculous. I was getting after my child for eating a sugar cookie with bright pink frosting and sprinkles on top. Something designed for kids--that they shouldn't have to worry if they're going to die from eating it. So asinine.
Also--some people in the allergy community have commented that they do not keep their children's allergens in their house. I totally get that, and I've been tempted to do that too. I like the idea of your home being a safe place...but we have SO MANY ALLERGENS. It doesn't seem right to deprive Calvin either. We thought we had every precaution in place. The allergens are kept in a top shelf, that he couldn't reach--even with a chair--in a pantry with a childlock. I would have never guessed that a cookie, I had bought for myself to enjoy during naptime--that had gone stale so I threw it away would have been what did us in. I guess it goes to show you are human and can't think of everything. Our allergist recommends, and my husband agrees and I mostly agree (ha) that he's got to learn to ask, and that it's good for him to be prepared at home for the real world. He can't assume. Even if I only ever bought stuff that was safe for him, and he just ate everything and anything in our house--an accident could happen outside our home, or some packaging or recipe could be changed from an old favorite and we might not catch it. There are just so many hidden dangers. You can only prepare the best you can and make sure you have your Epi-Pen (and not be afraid to use it.)
I am truly grateful he responded to the epinepherine and that he lived through this attack. It's just sooo hard to know that we very likely will face this again. It's not one of those things you can say, "Oh...we learned our lesson. Glad we'll never have to go through that again." Because, with so many allergens, and him being so little, and you know...having to eat all the time...his chances of having it happen again are very real. It's a hard pill to swallow.
It is literally gut wrenching...seeing your child react to food as if it were a lethal dose of poison isn't something I'd wish on anyone. It is the most anxiety ridden thing to go through...and we've gone through it twice. It feels like a near-death experience. It's jarring and honestly, it takes me awhile to come down from. When Carter's eyes were rolling back, and I felt like I had to plead for the nurses to get going I couldn't help but wonder..."Will I walk out of the hospital alone...without my child? Will this be the last day I get to hold him? Did I tell him I loved him today?" You know you shouldn't go there, but it's a reality and it's hard to not let it wash over you in the moment...and then replay those awful moments like PTSD.
On one hand, I don't want Carter to remember this harrowing experience and he might not since he's so young. But, part of me does...so that he will be more careful when he reaches for food. He knew he was being sneaky--that's why he waited until he was alone. What an aweful burden to place on a three-year-old.
I hate food allergies. I truly, truly do. I pray that they will find a cure, and if they don't that it won't take my son away from me.
I'm so glad he's OK and try to not hold my breath and go back to normal life. I've heard with this you have to have a healthy level of anxiety--you can't be lax with it, but you can't let it take over your life. Finding a balance is truly hard. But, I know I have to for my mental health and for the example I set for Carter.
I'm so grateful, that even though this was awful to write about and think about, that my beautiful boy is upstairs sleeping safely and soundly.