Really Bad Day...

Today was the first time ever that I gave Sean his Epipen.  I'm still in a state of high emotion over the situation, mostly questioning everything I do, hoping desperately that I'm doing the right thing for my child.

Sean had his dose this morning and seemed fine.  About an hour and a half or maybe an hour and 45 minutes had passed, and everything seemed normal.  Then, he came over to me sort of coughing.  It wasn't a big strong cough, but more like he was clearing his throat or his chest or something.  He said he was okay, so I thought that maybe he had just choked on his own spit or something.  I started paying closer attention to him, but wasn't entirely alarmed yet.  But within a minute or so, he started crying pretty hysterically.  We couldn't get him to really articulate very well what was wrong with him, but did manage to get out that it was belly-related.  My husband wanted me to sit and watch him longer, but I was too scared.  I looked at my husband in the eyes and said, "He's having breathing issues and stomach issues. I have to give it to him."  And then I did it.  I have him an Epipen for the first time.  Despite the tremor I now have from this neurological problem I've developed, my hands did not shake.  I don't think I've ever done anything with such certainty in my life.  After the dose, he went into the bathroom and looked very sick.  I asked him if he needed to throw up, and he said yes.  He heaved a couple times over the toilet but nothing came out. 

After that, we decided to take him to the nearby urgent care for children.  We decided against calling an ambulance because the last time we did, they took almost a half an hour to get to our house.  The urgent care is just a few minutes down the road, so I quickly loaded our middle son into the van and then got Sean into the van and sat with him while we waited for my husband to bring the baby.  In that time, about 10-15 minutes had passed, and Sean was still acting pretty distressed.  His skin was pale and had a sick grayish color to it, and he was still acting like something was very, very wrong with his stomach.  In the interest of being safe, I went ahead and administered the second dose.  

We drove him to the urgent care, only to be told that the urgent care part didn't open until 3pm.  I just looked at the woman and said, "You're kidding..." and I ran out the door carrying him.  Our pediatrician's office is right across the parking lot from the urgent care, so I ran carrying my 40-pound child there as quickly as possible.  Tom had been parking the car with the other two boys and had no clue I did that.  The pediatrician's office got us in immediately, checked his vitals, and said he was stable.  They told me we needed to go to the ER for several hours of observation, and that they thought he would be good to travel by car.  If I wasn't comfortable with that, they would call EMS.  I didn't love the idea of taking him ourselves, but I was armed with three more Epipens and the doctors thought he was doing okay, so we did it.

He did okay through the hospital visit.  They checked his vitals and watched him until 6 hours after the last dose of epinephrine.  He went hours with no symptoms and we were set free.  On the way home, he began acting like he was having difficulty breathing.  It started with him taking unusually deep breaths, then he began making the coughing noise again, as if he was trying to clear his throat.  Then he began to ask for his bucket again, the one we brought with us in case he had to vomit.  I began to freak out.  I told my husband to turn around because we were near the urgent care (the one we started at, yes they were open this time).  We never went in, but it made me feel better just to sit there in the parking lot for a bit.  After a few minutes, we headed for home again.  

I spoke to Dr. M. and we have a plan for tomorrow.  We'll continue Benadryl around the clock for the day and he'll continue his course of steroids.  For the morning dose, he said we could do either the full dose or a half dose, whatever we felt comfortable with.  I think both of us will feel more comfortable with the half dose.  He said many of his patients are having problems right now and that he thinks that there are high amounts of the seasonal allergens in the air right now (ragweed, etc) and that it might be pushing people over the edge as far as reactions go.  He wasn't entirely convinced it was a full anaphylactic reaction, but said he would also have given the Epipen in my situation.  Had we been in the office setting, he would have been able to monitor his vitals and see if the epi was really necessary.  Out in the real world, I don't have that luxury, so I did what was necessary in our situation.

Going forward will be scary.  I just hope that something changes to make this tolerable for him.  Dr. M. said that a large reason why people fail OIT is because of stomach problems.  Sean's major symptom on the very first day was stomach upset, I've noticed him burping more, and then today he was in clear belly distress.  I'm scared of what this means for him.  I'm scared of every single decision I'm making right now.  Is OIT the right thing?  Should I really send him to preschool now?  I know his risk of reaction is a lot higher if he gets sick.  Should I send him to be surrounded by a bunch of little walking Petri dishes?  Should I send him out of my (or my husband's) control into a world filled with unknowns?  Should I trust that his preschool teachers will be competent to recognize a reaction quickly and administer the Epipen if needed?  Should I put it off a year and hope things are better by Kindergarten?  Should we still move back out into the country to be closer to family, knowing that will put us much farther from medical care?  We're lucky to have the urgent care and pediatrician just down the road, as well as our family doctor and a nationally-recognized children's hospital within close proximity.  And more questions... Did I overreact?  Should I have held off on giving the epi?  And the unthinkable.. What if I had hesitated to give the epi?  My mind is swimming and I've spent the night on the verge of tears.  Perhaps I should just go to bed and write more tomorrow after I've had time to process it all.  And tonight, I will hug all my babies extra long because I need to feel their warm little bodies, to hear their breathing, and to know that everything will be okay.  Tomorrow, we will continue on with careful baby steps and hope that this was merely a glitch in an otherwise successful mission.

“Courage is only the accumulation of small steps.”                                                                                              -George Konrad