I hesitate to write this. I wasn't sure that I was going to. But I feel like I need to let others know what happened so that they can guard against it. I'll apologize now for this post being a novel, but there's no other way for me to share Middle Man's story without sharing ALL of it.
Almost two weeks ago, Middle Man caught a virus and woke up Wednesday night throwing up. We kept him home from school Thursday and he was better. He returned to school Friday and was fine Saturday and Sunday during the day. Sunday night he had intestinal issues and was up all night. We kept him home Monday and during the afternoon the Little Monkey got sick and started throwing up. Monday evening Middle Man started coughing and that is usually a sign that his asthma has been triggered (he has illness induced asthma). So we started breathing treatments and first thing Tuesday morning I took both boys to the pediatrician. She said that they both had a virus, and that Middle Man's lungs sounded pretty clear. She said that she could hear a slight "hitch" but that other than that he sounded good. Even though the breathing treatments weren't helping the cough, she said to keep up with them just in case his asthma kicked in.
Wednesday morning, Middle Man felt better even though he was still coughing a little and he wanted to go to school. So I sent him, but I fully expected to get a call to come and get him at some point. And that call came from the school nurse around 10:30 am. I was in the middle of spring cleaning, so I hopped in the shower, threw on some sort of matching clothes and went and to get him. When we arrived at school the nurse walked him to the lobby and he looked AWFUL! He was very pale and had big dark circles under his eyes. You could visibly see that he was having trouble getting air. The nurse said his pulse ox was 90. As we walked to the car, I thought that I'd take him straight to the pediatrician and I'd call on the way there. But looking in the review mirror he looked so horrible that I instead drove around the corner to a local Emergency Room. When the admitting nurse took his vitals, his pulse ox was 90 and his heart rate was 240. They rushed him back and immediately hooked him up to albuterol and a pulse ox meter. We ended up being in that ER for around 5 hours that day. His care was lacking to say the least. The on call doctor and the Resident in charge didn't quite get on the same page so some of the treatments that were discussed were not administered. They were busy that day, but that's no excuse for substandard care. His oxygen level never did get stabilized so around 4:30 pm they decided that he'd be better off at a children's hospital in downtown Cleveland and they called for an ambulance to take him. When the ambulance team arrived, they were visibly shocked and upset by the lack of care and treatment that he received and they administered all the meds that he should have been getting all day. His oxygen level came back to the normal range even before we left. When they listened to his lungs, they heard nothing. No wheezing, no air moving, nothing. His lungs were basically bricks and nothing was getting in there. The ambulance team was great and they did a great job of taking care of him. We discussed his food allergies and they made note of it because the ER never did even though I mentioned that he has "life threatening food allergies" to several people and told them what they were. The ambulance team was concerned because one of them was eating peanut butter crackers in the front seat. They made sure never to touch him without gloves on.
Once we got to the children's hospital, he was admitted to the PICU and he was triaged and every team came to assess him and come up with a plan. He was going to be on continuous albuterol nebulizers for at least 12 hours along with steroids. After that they would start spacing him out to 1 hour in between treatments, then 2 hours, then 4 hours. Once he was able to get to 4 hours and was doing well, he'd be transferred to the Pulmonary Floor for further treatment and to be released. He also wasn't able to eat or drink anything until he got to that 4 hour point. He ended up going without eating for 36 hours and he was miserable. I did have Hubs grab some shelf stable snacks from home and bring those but the hospital assured me that they would be able to feed him safely when the time came. Of course everyone that we came in contact with got the same statement about him having "several life threatening food allergies" and I'd rattle each one of them off.
We spent Wednesday night and all day Thursday in the PICU. Hubs came to the PICU around 2 pm Thursday and that gave me a chance to run home, check on the other boys (who were being taken care of by Grandparents), shower and get a few things we needed. He was still on every 2 hour treatments when I left, but they moved him to every 4 hours while I was gone and gave him the go ahead to eat. Hubs did a great job calling the contact we had for food service and going through all of his allergies and having them check labels for what was safe and what wasn't. There was a menu for us to look at that had ingredients listed but that menu was for the "regular items". We had a gluten free menu but there were no ingredients listed on it. We could only go by what food service told us. They wanted to stick to the gluten free menu because even though it was only safe for three of his allergies (wheat, rye, barley), it was cooked in a gluten free kitchen, with gluten free pans and was safer in general than the regular kitchen. We just had to avoid his other allergies (oat, eggs, peanuts and tree nuts). His lunch that day was Amy's Gluten Free Mac and Cheese, turkey sausage and gluten free French fries. Hubs had pre-ordered dinner for him too and he had gluten free pasta with tomato sauce. He did fine with lunch. When dinner came, he only took a few bites and said that he didn't like it and that his stomach hurt. I called the nurse and she got him some Motrin for the stomach pain and he seemed better. For the rest of the night, we stuck with prepacked potato chips that we brought from home and he seemed fine.
Around midnight they came in and moved us up to the Pulmonary Floor. We were both asleep at the time so I tried to gather up all our stuff (we don't travel lightly at all) and we were escorted upstairs. He was given another breathing treatment and more meds and we didn't see a doctor until 8 am. The attending doc came in and said that Middle Man was doing great and they were going to move the treatments out to every 6 hours and if everything went well, we'd be released Friday night, or Saturday morning (and more likely Saturday morning). Some Residents came in to look at him and our nurse changed. After everyone checked him, I called down to order him breakfast. The contact we had in food service was not in that day and there wasn't anyone else to speak with. I explained to the person taking the order about Middle Man's food allergies and she got the ingredients from the pancakes on the gluten free menu and I ordered him pancakes, turkey sausage, yogurt and a banana from the gluten free menu. Middle Man didn't like the look of the pancakes (they looked different than what he's used to, so it made him nervous to eat them) so he skipped those. He ate the turkey sausage and part of the banana and by-passed the yogurt because instead of coming in a Dannon package, it was spooned out into a bowl and that made him nervous too. We spent the better part of the morning and early afternoon watching movies and playing games. He was very antsy to get released and was hoping for Friday night. His breathing was good. He still had a few wheezes but was doing well and his oxygen levels were between 100-97.
He was ready for lunch and due to the fact that our contact wasn't in that day, we decided to order him the same lunch that he had the day before and was already deemed safe. I ordered him Amy's Gluten Free Mac and Cheese and gluten free French Fries. When it came he didn't seem all that excited which was odd because he loved that same meal the day before. He ate 2 French Fries and took one bite of the Mac and Cheese and said that it didn't taste or look the same. He asked me if I was sure that it was safe, and I told him that they went over everything with us and they told us it was but if he wasn't comfortable he didn't have to eat it. He then started to complain of stomach pain. I called his nurse and told her and she called the Residents to come check him out. He was writhing in pain and we were trying to figure out what was going on. That's when his nose started running, which it wasn't doing before. The Residents thought maybe it was reflux, constipation, etc. That's when I said "I just don't understand. He had the same problem last night but he has no issues with the prepacked chips". And that's when the light bulb went off and we all looked at the food. At this point he was screaming, his skin was bright red and he was yelling "Help Me!". The one Resident ordered Benadryl for him. I told her that he has known anaphylaxis and he gets epinephrine not Benadryl. That's when she informed me that he was not having an anaphylactic reaction because he wasn't having breathing issues and he would get Benadryl. They gave him that and it did nothing. He was still screaming and tearing at his skin. I had taken his shirt off and I was starting to see hives pop up. That's when I told her that she needed to give him epinphrine NOW. She ordered it and another nurse came in and gave it to him. At this point we had 3 nurses and 2 Residents taking care of him. Nothing happened with the epinephrine. The Resident that seemed in charge was yelling at him to calm down and give the medicine time to work "It's not magic. It takes time". I knew when she gave him the Benadryl first that she wasn't too familiar with anaphylaxis. But when she made that comment, I completely dismissed her. Yes, epinephrine is magic or at least it should be. It has always worked within seconds for him. He was still screaming and yelling for help when the two residents left and it was just me and his nurse who was like a deer in the headlights. She was visibly scared and wasn't saying a word. At this point I started to panic and I was yelling "This isn't normal. He needs help. He needs a second dose of epinephrine". I ran out of the room to the nurses station and yelled for them to get those doctors back. When they came in a minute later I told them he needs a second dose and I had my Auvi Q in my hand was going to use it. Another dose was ordered and another nurse came in and gave it right away. Then the head nurse came in with all the nurses on the floor. She got oxygen going and more albuterol. His oxygen level was in the 80's. At this point the team from PICU came in and took over giving him a third shot of epinephrine, magnesium, more Benadryl, Zantac, steroids, aterax, heliox, and other stuff that I just can't remember. The PICU team raced him back to their floor. The last I saw his oxygen level on the monitor it was 78. They had anesthesia waiting in case they had to insert a breathing tube. After working on him for what seemed like an eternity, he was finally stabilized. I really thought we lost him. I thought he wasn't going to be able to come back from this.
We stayed in the PICU for the rest of our stay and were finally released Sunday afternoon. The doctor in charge of the PICU wanted him there in case he had a biphasic reaction. That was fine with me because I wasn't going to allow him back up on that Pulmonary floor.
So what happened?
From what we have been able to gather, the Mac and Cheese wasn't the gluten free kind, but regular Mac and Cheese which contains semolina flour and wheat. According to food service, the distributor who sends them the product sent the wrong product and no one caught it.
But what even scares me more than the food mix up were two things:
1. The Residents on the Pulmonary Floor had NO idea what anaphylaxis was or how to treat it. You ASSUME that doctors get it. Assume NOTHING. All food allergy parents, or individuals with food allergies know that you NEVER give Benadryl first. Epinephrine, then Benadryl. We also know that epinephrine only last for 20 minutes in the system and another dose may be necessary if the reaction isn't subsiding or if it increases in intensity. I had to tell them that. And no one had any idea what time the first dose was administered. I looked at my cell phone at 2:26 pm and said that if he wasn't better by 2:36 pm I was demanding another dose or giving it to him myself. The lack of knowledge on handling anaphylaxis makes my blood run cold.
2. Epinphrine had to "ordered". There wasn't any emergency epinephrine on the floor. The first dose seemed like it took 5 minutes to get there. 5 minutes is way too long!! When you need it, you need it now. This part pisses me off. There is just NO excuse for this.
What are my take-aways from this:
1. I should have had the school call an ambulance for the asthma. I didn't realize how bad he was until we got moving. He's never had an asthma attack this bad before. Hind sight being 20/20 I should have had an ambulance transport him to our usual ER that is 20-25 from the school. I knew the one we went to wasn't the best. I just didn't realize how bad it was.
2. The food service spiel sounded safe. But it wasn't and I had misgivings and I should have trusted my gut. I didn't feel comfortable and I should have just had him eat chips until I could bring him something safe from home or elsewhere.
3. ALWAYS CARRY YOUR EPINEPHRINE, even at the hospital.
4. Don't trust that doctors understand anaphylaxis and know how to treat it. Clearly that was NOT the case here.
5. When they say IT ONLY TAKES ONE BITE, it's the honest truth. He could have died from one bite of that Mac and Cheese.
6. NEVER be afraid to advocate for your child, yourself or loved one, even if you feel you are under-schooled. Schooling isn't everything and some lessons may not have been taught or some people may not have common sense.
After Middle Man was stabilized, the Resident that failed to treat him properly, patted me on the shoulder and said "Way to advocate for him mom".
7. I should have karate chopped her in the wind pipe like I wanted to.
I'm going to follow up with the hospital on all of this. Clearly anaphylaxis training needs to be done for everybody. And epinephrine needs to kept readily available. I will not allow this to happen to another child. I feel like we were very very blessed that Middle Man came through this.
I don't really need to address the incompetence of the first hospital. The ambulance team stopped in Thursday evening to check on Middle Man and they told me that they took their issues to their supervisor who took them to the hospital supervisor. I do however have a survey that they sent me and I will voice my concerns on that.
When I explain Middle Man's allergies to people, I always feel like they look at me sideways. I realize that most people don't truly understand unless they've seen an anaphylactic reaction. But I truly feel that people think I'm being over protective or dramatic or that I feel "special" by making my son seem worse than he is. I feel like people only half listen to what I say because I'm just an over protective mom. I feel like those Residents did the same thing that day. I hope they never make that mistake again. I hope from now on they listen to the patient or the patients advocate. Isn't it better to err on the extreme then to let a patient die or get injured? I hope they get it now.
My son took one bite of the wrong food and could have died.
Let that sink in a little bit....