Exactly two weeks and five days after our very first hospital visit (discussed here) we found ourselves in an ambulance heading to the emergency room again.
What Did He Eat?
My next post was going to be a celebratory exclamation that we were getting to remove something from the list: white potatoes. Monk had been eating Van's waffles made with potato starch for some time so our allergist gave us the green light to try actual potatoes.
I made a pot roast, which he has enjoyed on multiple occasions, and mashed potatoes. I was careful to cook the potatoes and separate out a portion for Monk before adding in any milk or butter. I mashed his with soy milk.
One bite of each and he refused both.
I try to never push food on him anymore as the guilt from a subsequent reaction just stinks. So instead I gave him a toddler pouch made of mango and coconut milk. He had eaten it once before without instance and I was excited to have him "pass" coconut since coconut milk and oil are good baking substitutions for allergy kids. He inhaled it.
About 15 minutes later, the symptoms began. Coughing was first. Hubby brought him in from outside to give him his asthma treatment, and before we had finished giving him two puffs of his inhaler I noticed one hive. Just one little seemingly insignificant hive. I stripped him down to check for others, and as hubby got a dose of Benadryl into him, there were a few more. No sooner was he dosed up and down to his diaper then he started to vomit.
Three organ systems engaged = Epi Pen.
Difference #1: It was the first time that I did it. I administered the Epi Pen myself. No chickening out and letting a nurse or my dad do it. Honestly, stabbing a needle into my kid's leg wasn't the scary part anymore.
Difference #1: It was the first time that I did it. I administered the Epi Pen myself. No chickening out and letting a nurse or my dad do it. Honestly, stabbing a needle into my kid's leg wasn't the scary part anymore.
After the Epi
Monk has been given an Epi Pen twice before and each time his symptoms all but disappeared.
Difference #2: The vomiting didn't stop after the Epi, it got worse.
Because he seemed to get momentarily worse after we administered the Epi Pen, we called 911 and waited for an ambulance to arrive. I wasn't going to risk driving him in the car with his reaction growing.
Two ambulances, one fire truck and about 10 emergency responders later, my Monk had been checked over and was doing much better. Epi Pen administration calls for a follow up trip to the ER, even when symptoms are no longer present, since epinephrine is a fast acting but not long lasting drug.
Difference #3: We followed our allergy action plan to the letter, calling for assistance and letting the medical team make the decisions.
Since the EMT charge physician didn't want us to drive to the hospital given Monk's history, we got an exciting ride in an ambulance. Mommy note: they strap YOU onto the gurney and then have you hold your child.
We arrived at the hospital, the EMT checked us into the ER, and the waiting began. From here on out the differences were just too many to count.
Difference #3: We followed our allergy action plan to the letter, calling for assistance and letting the medical team make the decisions.
Since the EMT charge physician didn't want us to drive to the hospital given Monk's history, we got an exciting ride in an ambulance. Mommy note: they strap YOU onto the gurney and then have you hold your child.
We arrived at the hospital, the EMT checked us into the ER, and the waiting began. From here on out the differences were just too many to count.
The Waiting Game
I am the first to admit that I have never waited in an ER. Thankfully, until this night I have never had to. We have all heard of the horror stories of people waiting hours on end just to be seen, but until you are the one waiting, it just doesn't register.
Having had such a different experience so recently, it made it that much harder, but there were a few things that I immediately thought were off. A nurse did come listen to Monk with a stethoscope when we arrived and hooked the pulse ox to him to get a reading, but neither piece of information was shared with me. She walked away as quickly as she had come over to us. The EMT who checked us in was the one to come and tell us that they couldn't see us and that he would have to walk us to the waiting area. He seemed irritated and rolled his eyes, signalling that maybe he didn't agree with that decision.
The ER staff had been told that Monk had thrown up his last dose of Benadryl and had only received two puff of his steroid inhaler (6 puffs were administered on previous occasions for breathing issues during anaphlyaxis.) No one asked if we needed any subsequent medications or if we had them on hand. For perspective purposes, following previous anaphylactic reactions, Monk was given does of Benadryl and Steroids regularly for 3-5 days following the initial reaction.
My father (the pediatrician) had luckily been at a meeting at the hospital that evening and met me in the ER waiting area. We did not tell anyone that the child waiting was the grandchild of one of their own physicians. It didn't seem important, nor did we think that we should receive special treatment based on status instead of medical importance.
No one came to the waiting room to check Monk's respiration. No one came to hook up the pulse oximeter that was still wrapped around his toe. Nothing.
Experations
After two hours of nothing, my father went to find a nurse on duty to ask about our wait time. We were told that it would be a least and hour/hour and a half, if not more. The first thing to expire was my patience, and after sitting in the waiting room for 2+ hours at this point with a baby that had nothing on but a diaper due to a panic and rush to hurry and wait, I was exhausted. Monk desperately tried to escape his grandfather and me to run around on the floor of the ER waiting room with 2 dozen other sick children, but we held tight thinking, "We have to be called next" and "Didn't we get here before them?"
I waited a bit longer and then went to find someone myself to answer my questions as to why we continued to sit, unmonitored, in their waiting area. The charge nurse on duty came out to speak with me. Even though Monk was seeminly fine and recovered from his reaction, I knew that there was always a possibility of a relapse, similar to the one he had at the hospital just a few weeks prior. I quickly told him my concern of why we were still waiting, and that I thought it was strange to have been sent to the waiting room immediately here when the same problem got us immediately seen in another hospital. He asked if he could look at Monk's file and get back to me and off he went.
When he returned I assumed he had read the same medical history that caused the EMT charge physician to decline our request for self transport. I assumed that he knew that my son had been admitted or overnight observation to this same hospital's alternate campus less than three weeks prior. That he had finally realized that my child hadn't been given medication to keep another reaction from happening.
What I did learn was that he thought I had done everything right and that he didn't need anything further, actually saying "you did everything we would have done." So I started asking my own questions. I asked if their monitoring protocol for anaphylaxis was 4 hours. Yes. Since my child's reaction had been more than 3 hours prior and we still had at minimum of a hour to wait, would that mean that his monitoring time will have been expired by the time we were seen? Yes. What would happen when we finally were seen since our monitoring time had expired? We would likely be sent home.
So why was I sitting there waiting.
And when he commented that I should feel lucky since the night before was an 8 hour average wait time, not only was my patience expired, but also was any semblance of a calm and rational mother. My mind quickly flashed to scenes of me sitting in that waiting room with my child well into the night and then getting called back to have someone listen with a stethoscope, shrug their shoulders, and send us on our way (likely with a nice fat hospital bill too.) I juggled this with the fact that it was a secondary reaction was a possibility and the hospital staff seemed to consider that the waiting area was within their four walls and thus "under their care?"
I opted, with the advise of my dad, to leave the hospital, now close to 4 hours after his reaction, and to medicate and monitor him myself. With the largest, most espresso infused coffee that Starbucks sells in hand, we got back home around 11:00pm. I stayed up for a good part of the night with my sweet Monk asleep right next to me so that I could ensure that he was okay.
The next day started the process of reviewing any missteps in both my and the hospitals actions so that we didn't have to go through that again and neither did another allergy family. Calls were placed to the Family Advocacy group, heads of the ER, etc. We now know that protocol wasn't followed. He should have been hooked up for continual monitoring immediately. He should have received additional doses of medication to stave off a subsequent reaction. He shouldn't have been sent to the waiting area.
Lessons Learned
Here are a few of the lessons that I have learned.
1. Find out the protocol for the ERs in your area. Knowing what their protocol was could have saved me hours of waiting there and hours of sleeplessness that night.
2. Ask your physician or allergist if they can write a note to flag your child's file. Our allergist added a note to Monk's file alerting this to the severity of his allergies, highlighting his medical history, and giving instructions for specific care when and if we end up in an ER again.
3. Be vocal. Ask questions. You are your child's voice in so many ways, so be their advocate. If your gut is telling you that something isn't right, go with it.
4. Don't leave the hospital. I know, I know. This is exactly what I did, but in hindsight, if anything had happened to my child, I would have regretted it forever. It would have been better to continue fighting to have my son seen.
5. If you have connections, use them. My father never told anyone who he was and neither did I. At that time, and still today, we both felt that their care for Monk should have been based on his need, not who we know. I would hate to think of a family in our situation with no connections, knowing no one and sitting for hours, but if it helps your child to get the care that you know they need, play that card.
This experience, unlike the last, taught us that even amongst the medical community, there is still quite a bit of education and information that needs to be shared. While it has also left me with a layer of doubt, questioning as to whether or not I Epi, whether or not we go to the hospital, I hope that in time that part of the experience will fade. One thing that I no longer doubt, however, is that both our first and second ER visits have made me more educated, stronger and more empowered to do what I need to do for my child.
I am the first to admit that I have never waited in an ER. Thankfully, until this night I have never had to. We have all heard of the horror stories of people waiting hours on end just to be seen, but until you are the one waiting, it just doesn't register.
Having had such a different experience so recently, it made it that much harder, but there were a few things that I immediately thought were off. A nurse did come listen to Monk with a stethoscope when we arrived and hooked the pulse ox to him to get a reading, but neither piece of information was shared with me. She walked away as quickly as she had come over to us. The EMT who checked us in was the one to come and tell us that they couldn't see us and that he would have to walk us to the waiting area. He seemed irritated and rolled his eyes, signalling that maybe he didn't agree with that decision.
The ER staff had been told that Monk had thrown up his last dose of Benadryl and had only received two puff of his steroid inhaler (6 puffs were administered on previous occasions for breathing issues during anaphlyaxis.) No one asked if we needed any subsequent medications or if we had them on hand. For perspective purposes, following previous anaphylactic reactions, Monk was given does of Benadryl and Steroids regularly for 3-5 days following the initial reaction.
My father (the pediatrician) had luckily been at a meeting at the hospital that evening and met me in the ER waiting area. We did not tell anyone that the child waiting was the grandchild of one of their own physicians. It didn't seem important, nor did we think that we should receive special treatment based on status instead of medical importance.
No one came to the waiting room to check Monk's respiration. No one came to hook up the pulse oximeter that was still wrapped around his toe. Nothing.
Experations
After two hours of nothing, my father went to find a nurse on duty to ask about our wait time. We were told that it would be a least and hour/hour and a half, if not more. The first thing to expire was my patience, and after sitting in the waiting room for 2+ hours at this point with a baby that had nothing on but a diaper due to a panic and rush to hurry and wait, I was exhausted. Monk desperately tried to escape his grandfather and me to run around on the floor of the ER waiting room with 2 dozen other sick children, but we held tight thinking, "We have to be called next" and "Didn't we get here before them?"
I waited a bit longer and then went to find someone myself to answer my questions as to why we continued to sit, unmonitored, in their waiting area. The charge nurse on duty came out to speak with me. Even though Monk was seeminly fine and recovered from his reaction, I knew that there was always a possibility of a relapse, similar to the one he had at the hospital just a few weeks prior. I quickly told him my concern of why we were still waiting, and that I thought it was strange to have been sent to the waiting room immediately here when the same problem got us immediately seen in another hospital. He asked if he could look at Monk's file and get back to me and off he went.
When he returned I assumed he had read the same medical history that caused the EMT charge physician to decline our request for self transport. I assumed that he knew that my son had been admitted or overnight observation to this same hospital's alternate campus less than three weeks prior. That he had finally realized that my child hadn't been given medication to keep another reaction from happening.
What I did learn was that he thought I had done everything right and that he didn't need anything further, actually saying "you did everything we would have done." So I started asking my own questions. I asked if their monitoring protocol for anaphylaxis was 4 hours. Yes. Since my child's reaction had been more than 3 hours prior and we still had at minimum of a hour to wait, would that mean that his monitoring time will have been expired by the time we were seen? Yes. What would happen when we finally were seen since our monitoring time had expired? We would likely be sent home.
So why was I sitting there waiting.
And when he commented that I should feel lucky since the night before was an 8 hour average wait time, not only was my patience expired, but also was any semblance of a calm and rational mother. My mind quickly flashed to scenes of me sitting in that waiting room with my child well into the night and then getting called back to have someone listen with a stethoscope, shrug their shoulders, and send us on our way (likely with a nice fat hospital bill too.) I juggled this with the fact that it was a secondary reaction was a possibility and the hospital staff seemed to consider that the waiting area was within their four walls and thus "under their care?"
I opted, with the advise of my dad, to leave the hospital, now close to 4 hours after his reaction, and to medicate and monitor him myself. With the largest, most espresso infused coffee that Starbucks sells in hand, we got back home around 11:00pm. I stayed up for a good part of the night with my sweet Monk asleep right next to me so that I could ensure that he was okay.
The next day started the process of reviewing any missteps in both my and the hospitals actions so that we didn't have to go through that again and neither did another allergy family. Calls were placed to the Family Advocacy group, heads of the ER, etc. We now know that protocol wasn't followed. He should have been hooked up for continual monitoring immediately. He should have received additional doses of medication to stave off a subsequent reaction. He shouldn't have been sent to the waiting area.
Lessons Learned
Here are a few of the lessons that I have learned.
1. Find out the protocol for the ERs in your area. Knowing what their protocol was could have saved me hours of waiting there and hours of sleeplessness that night.
2. Ask your physician or allergist if they can write a note to flag your child's file. Our allergist added a note to Monk's file alerting this to the severity of his allergies, highlighting his medical history, and giving instructions for specific care when and if we end up in an ER again.
3. Be vocal. Ask questions. You are your child's voice in so many ways, so be their advocate. If your gut is telling you that something isn't right, go with it.
4. Don't leave the hospital. I know, I know. This is exactly what I did, but in hindsight, if anything had happened to my child, I would have regretted it forever. It would have been better to continue fighting to have my son seen.
5. If you have connections, use them. My father never told anyone who he was and neither did I. At that time, and still today, we both felt that their care for Monk should have been based on his need, not who we know. I would hate to think of a family in our situation with no connections, knowing no one and sitting for hours, but if it helps your child to get the care that you know they need, play that card.
This experience, unlike the last, taught us that even amongst the medical community, there is still quite a bit of education and information that needs to be shared. While it has also left me with a layer of doubt, questioning as to whether or not I Epi, whether or not we go to the hospital, I hope that in time that part of the experience will fade. One thing that I no longer doubt, however, is that both our first and second ER visits have made me more educated, stronger and more empowered to do what I need to do for my child.
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