Monday, November 30, 2015

Life's an Adrenaline Rush!

And sometimes it includes a shot of Epinephrine.

Soooooooooo, Have you missed us since July? Sorry. I have no good reasons, other than life has been different around here, and I'm still kind of finding my way through it. I'll start with what happened this weekend and then I'll do some updates of how life has changed around here over the past few months.

Five year old B and I got to sleep overnight at the Hospital! We went to our city "Santa Parade" where we enjoyed free cookies and cocoa, and watched a short parade that ended with Santa and Mrs. Clause riding past in a carriage. After waving at Santa and then waving at the policeman at the end of the parade we headed back to our car. Our B boy showed me his lip, it was puffy and bleeding a little. I questioned him about how it got that way, did someone hit him? (someone being his brother I supposed) No. Did he fall and hit his lip on something? No. Did a bug bite him? No. Hmmmmm, That's weird. I didn't really think it was an issue, about 30 seconds later B slipped and fell and although he said he was okay (all 3 kids will say that while they are still on the ground, or even in the process of falling "I'm Okay!") by the time we got to the car B was crying. Ken did his best to comfort him. We made it home. I got some food for the kids, the cookie and cocoa at the parade were really just the first course of dinner. We discovered that B had climbed into our bed. Ken and I laid down on either side of our quiet little boy and tried to figure out what was wrong. He really wouldn't say much. I noticed that his lip was still puffy and pointed it out to Ken. B didn't want to put ice on it, but he was willing to eat an otter pop (I figured otter pops are ice and he'd be sucking on it- thus the ice would be on his fat lip :) sometimes I'm awesome at doctoring!) and he got out of our bed and followed Ken into the kitchen.

This is where things got weird. (or weirder, since a quiet B with a fat lip is already weird) Before Ken could get the otter pop ready, B threw up on the kitchen floor. Chaos ensued for a few minutes. Was that the problem, did B have a stomach bug? Our oldest son J walked around proclaiming loudly that he didn't want to get sick. Our daughter just wants to be part of the action and she was none too pleased that she had to sit with me (far away from the vomit) for 5 minutes while Ken cleaned up and got B situated on the couch.

Once on the couch B seemed to be okay, he'd cough, but he never threw up again. After 20 or so minutes he started complaining that his tummy hurt. He said the pain was in his belly button. I got him a warm rice bag to see if that would help. He didn't like it but when I offered the chance to get in a warm bath to see if that might help sooth the pain he was feeling, he jumped at the chance.

Once in the tub things got weirder. I noticed a hive on the back of his shoulder as I was helping him take his clothes off. Soon he was scratching- hard enough to draw blood- and there were hives just about everywhere, his back, neck, arms and thighs. Oddly, to me, the hives were only where the water had touched him. Later I told Ken that I wondered if the hives had something to do with something in the water- he told me he wondered the same thing.

Hives? We've dealt with hives. "Benadryl!" Ken said. I ran and got the boy some Benadryl. I was still uneasy. This just didn't make sense too me. All of these symptoms seemed so disjointed, nothing really fit together for me, nothing screamed "We're all part of the stomach flu" and so I told Ken that I thought we needed to take B to see a doctor.

Soon B and I were making the trek (15 or 20 minutes) to the closest urgent care facility offered by our healthcare provider that was still open. (The closest to our house- 5-10 minutes away- closed at 8 PM on Saturdays- which is right about the time we would have arrived). I got to the Insta-Care and realized that there at that location they had a child specific urgent care. I had asked Ken to call ahead to get us on the waiting list (because sometimes you have to wait hours) and I decided to check at the Kids-Care to see if he had spoken to them. He had! "Oh, the boy with the hives" said the receptionist, she got us checked in quickly and it wasn't too long before a nurse took us back and started weighing and measuring my boy.

While she collected his vital information she also was collecting information from me. The timeline of what had happened. When all the different symptoms presented. I find, and I hope I'm not alone in this, that I have a hard time expressing myself well in these types of situations. I'm watching my little boy deal with some sort of Dr. Jekyll/ Mr. Hyde illness and I know WHAT happened but they want to know the TIMES, how long inbetween this and that. I did my best, I figure nurses and doctors see a lot of parents like me, people doing their best to put into words what weird things are going on with their children.

The doctor was sitting at a desk about 15 feet away from where I was watching/talking to the nurse, and I'm sure she heard everything I said. When she came into the exam room she asked me to tell her the timeline again and asked some follow up questions and then she said that B was presenting with the signs of Anaphylaxis. Not Anaphylactic Shock- but anaphylaxis......I looked confused. She explained more, B had 1- Swelling (lips and ears, I hadn't noticed his ears, chances were good that he was having swelling in his mouth as well.) 2-Vomiting 3- Stomach Cramping/abdominal pain and 4- Hives. (I remember the nurse and doctor also discussing his blood pressure and his coloring- over the past few days I've noticed that those are also signs of anaphylaxis).

Here's where my world started spinning even more. The doctor told me that because he had multiple symptoms of Anaphylaxis, he needed an epinephrine immediately and then she would send us to a hospital nearby that had a pediatric unit where he could be observed for a few hours. Why did this start my world spinning? I've been the mother of a nut allergic child for a year now- why didn't I put together that vomiting and stomach pain were part of an allergic reaction, let alone, why did it take me until he had a body full of hives to figure out there was something wrong. It was the vomiting, the vomiting confused me. But I knew that I had read in all that paper work a year ago, that vomiting was indeed a sign of an allergic reaction. And, wait, what? Did that doctor just say he needed a shot of epinephrine? Immediately? But she just told me that he wasn't in shock. Had I been doing it wrong? Little E has come into contact with/reacted to an allergen twice since she was diagnosed. Both times, I recognized her symptoms- Screaming and hives- and I have given her the approriate dose of benadryl and then watched her for more symptoms, praying that she would breath easily and wouldn't go into shock. If she did go into shock I knew what I needed to do- EpiPen to the Rescue! But if that had ever been needed would it have turned out to be too late? Should I have used her epipens when I knew she was having a reaction rather waiting for a "bad" reaction?

B got his shot. He was very proud of himself because, in his words "I didn't even make ONE Tear!" within a few minutes he went from being the quiet little boy who we found curled up on our bed to jumping around in the exam room shouting about how big and strong he had been when he got the shot. He really perked up. We waited 20 minutes or so, the doctor came in a few times to check on him. His lip looked better, his hives were still there but there seemed to be less of them, his ears were still swollen. His demeanor had certainly changed. She spoke to a physician on the pediatric floor of a nearby hospital and he was waiting for us so that B could be observed and monitored for a few hours. I told Ken that I thought we'd be home before midnight.

So off we went to the hospital, my now happy boy and I. We eventually made it up to the right floor of the hospital. B got to put on "Hospital Pajamas" and the nurses got him all set up in his bed, they even found him a "Thomas the Tank Engine" video to watch. I got to tell the whole story again, this time the doctor said "Well, it's sure a good thing that you knew how to spot Anaphylasis"  at which point I told him that I didn't feel like I had spotted it- I took him to the doctor because there was just so many symptoms that I couldn't fit together, it didn't make sense to me. I also asked him about how I had always dealt with E's allergic reactions. He told me that I had done a good job and I shouldn't worry about B, he would be fine it wouldn't be too hard to keep him away from nuts (since that is what we think the allergen must be) because we are already taking precautions to keep E away from them. He then said that he wanted to observe B overnight and that he would be released sometime after 9 the next morning. I let Ken know that we wouldn't be home that night.

B really wasn't as perplexed as he looked in this picture- he's just really good at faces :)

And so there we were, spending the night at the hospital. We'd go home in the morning, everything was going to be fine, but everything was going to be different. Even though B was hooked up to monitors all night, he still slept pretty great. I on the other hand was sleeping on a couch made of mismatched pieces of plywood with a thin layer of vinyl on top of them....well not really, BUT you will never hear me say "oh, you need a guest bed? why don't you get one of those couches that they put in hospital rooms?". The fact that I was sleeping in my clothes didn't help much either. 

I spent a good portion of the night watching my little boy's heart beat, pulse/blood oxygen, and breathing as they were drawn in line form on a computer monitor next to his bed. Was it normal for his heart rate to be 120? It eventually went down to 108, was that better or worse. His blood oxygen levels were 94 to 95, but sometimes, when he was snoring or sleeping on his belly they went down into the 80's, but no alarm went I assume that it wasn't too low for too long. His breathing was the most interesting to watch, he had pretty steady breaths for a while 16 to 17 breaths per minute, they looked like little flat topped mountains separated by valleys. Then he started to snore, and the flat top mountains turned into a row of cursive lower case r's. I wonder if the doctors cared that my 5 year old was snoring. His brother, who sleeps on the top bunk of their bunk beds, had told us that he snored, but it never really meant anything to me until I heard it myself, and watched it on the screen. No one ever came in to investigate and he was sleeping VERY WELL, so I guess all of those things fall into the norm for a 5 year old boy. 

Every two hours or so the nurse and her assistant would come in and check on B, take his temperature and blood pressure and then check several of the worst hive covered areas. Every 4 hours or so they would bring in some benadryl and we'd have to figure out how to wake him up. I realized that I really haven't ever needed to wake him up, and I'm grateful because he is a really deep sleeper. At about 6:45 B sat straight up in bed and said "Mom! I've got to go potty!" I jumped up, unplugged all his monitors (as his nurses had taught me to do) and helped him to do what he needed to do. Since he had stayed up 3 hours past bedtime I figured he'd go back to sleep, but I was wrong. It was WAKE UP TIME! We got him hooked back up the the monitor and then we listened to some pretty music, eventually B talked me into letting him watch PBS- Wild Krats was on. The nurses brought him lots of fun activities- a Chuggington sticker book, a box full of Thomas trains and tracks AND a wooden truck that he could color and keep and a nice lady brought him breakfast. Our little B probably would have wondered if he was in heaven had he not been hooked up to the annoying pulse ox monitor. The time we thought we would go home, 9 AM, came and went. Eventually we did talk to the Morning Pediatrician, he told me that in his opinion parents rely too much upon benadryl and should use the epi-pens more quickly when their kids experience allergic reactions. The Nurse let B pick out a new, donated blanket to take home with him and we finally walked out of the hospital at 11:05. We had instructions, we had medications to pick up and follow up appointments to make. 

This whole experience has got me thinking, I've always felt that by giving the benadryl, when I noticed the first signs of an allergic reaction, I was erring on the side of caution- not jumping to quickly to medications that my child might not actually need- especially since after using the epinephrine you have to head to the ER to be observed- and possibly end up having a very similar uncomfortable night in the hospital. But maybe I have been walking on a wobbly tightrope between luck (that E's allergic reactions haven't caused as many symptoms as B's did) and disaster (that the benadryl just masked symptoms that would have had me jumping to use the EpiPen and by the time we do it might be a little too late) so I can see this doctors point. I still hope that I never have to use them- but I guess I feel a little more comfortable making the call at home rather than taking the kids into the doctor only to have them say- This kid need Epinephrine!

I am also starting to see this story as A Series of Tender Mercies, some people may say that this is just sleep deprivation can decide for yourself.
*This happened on a Saturday, when Ken and I were both home, it would have been a lot harder to handle if I had had to find a place for J and E to be while I rushed B to the Doctor and then to the hospital.
*Ken and I are often play good cop bad cop when it comes to the kids and what we should get checked out and what we can just wait and watch. (bad cop isn't necessarily budget friendly, since bad cop usually wants to take the kids to the doctor) As B's symptoms kept mounting I kept feeling more and more uncomfortable with just letting whatever this was play out. And so I said to Ken and B "I have to go to the bathroom, and then I'm going to pray about this". Something from my patriarchal blessing kept coming into my mind while we were at the hospital, basically I was promised that I as I raised my family I would recognize that I have the spirit of discernment in my life, and that I would be able to exercise wisdom in things pertaining to our mortal existence. I felt like this was a teaching moment for me- 1, that I had been prompted (by my feeling of unease) to take him to the doctor, and 2, that the things I was told, the things I learned through those 16 hours or so, would become the wisdom that would help us through other similar experiences that we are likely to have at some point over the rest of our lives.
*The Doctors and Nurses told me that I was dealing with the situation really well. One of the nurses told  me about a training she had been too about parents in this situation. The doctor had told them that they will find that most of the parents of children suffering anaphylaxis for the first time will be very scared and nervous and that the nurses should not forget to see to the parents comfort. He told them to explain what they needed to do for the child and then ask "How are you doing? Would you like a slushy? Always make sure to offer them a slushy!" (it seems like all the units of Primary Children's hospital have slushy machines. We were not at the main Primary Children's campus, but the pediatric floor of this hospital is part of Primary's, and soooooo, they have probably have a slushy machine.) I didn't get a slushy- the nurses kept offering me a Diet Coke- I didn't want one of those, LUCKILY they also stock chocolate milk! So- the tender mercy here is that I was somewhat prepared for this whole adventure- I wasn't expecting to have this experience with this child- but once I knew what was causing his symptoms I then kind of knew what would happen next  (other than the fact that I thought "a few hours" meant something like 3 hours.....not 13+ hours) 
*At the beginning of this school year I noticed a box on the counter in the nurses office of the school. It was a plastic pencil box, it had a label on it that listed a student's name, their teacher and that it contained their epi-pens. Because I knew that, in a few years, E would need to have that same medication at school, I asked the secretaries about the process. Elementary age kids aren't considered old enough to self carry/self administer epinephrine and because of this each student who needs it keeps their medication in the nurses office, if the medication needs to be administered, the teacher notifies the office and the medication is rushed to the child and administered as quickly as possible. So this morning I took B's Epi-Pen Jr's to the school and told them about the weekend he had had. There was more I needed to do, but the people who could help dot all the i's and cross all the t's of the district process were out of the office. I was given a form that our Pediatrician needed to fill out and sign and told that I could come back tomorrow to finish up the process. I figured I might as well drive over to the Pediatricians office. The doctor was able to quickly fill out the form and I was able to set up an appointment with the Allergist that treats E, her office happens to be in the same building- in fact its right next door to the pediatrician. Nice!
*The co-pay on epi-pens is $50. I know because I picked up a new one for E last month. Not too long after I picked up her prescription I saw something online about how you can get your co-pay waived. The "savings card" expired at the end of 2015, I felt good knowing that if for some reason we needed to get a re-fill on her prescription before the end of the year, we could use the savings card and I HOPED that next year, when it was time to fill the next prescription (because they are only good for a year) the drug company would be offering ANOTHER savings card. Well, Turns out B needs two sets of Epi-pens (one for school, one for mom to keep near B at all other times). It would have cost $100- luckily :) the savings card is good for up to 3 sets of pens AND it's still 2015!

I feel like there is more- but I'm tired and I'm still mentally and emotionally working through all of this. I'm still not used to it- yesterday night (just 7 hours after leaving the hospital) I told Ken that we couldn't let E have any of the birthday cake that was being served that night.......I then looked over at B and realized that yes- I had given him a slice of that cake and he had pretty much stuck his face right into it. oops. He was okay. Such is our life.

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