This blog is about Grace's courage and that spans a broad spectrum of experiences. Last week we had an experience that again demonstrated to me that Grace is much braver than the vast majority of adults I know. It also taught me a valuable a less in control.
At Grace's last allergy check up her peanut allergy had significantly gone down. This was amazing news. We had always accepted it would just be a part of Grace's life. On Friday, Grace's class celebrated the Chinese New Year with Chinese food from a local restaurant. I did confirm that that food was peanut free. At 2:45 the school nurse called to tell me she thought Grace's cold was taking a turn for the worse and she had developed a cough. I thought that was strange since she didn't have a cough when I last saw her. Thirty seconds later the phone rings again. The nurse is speaking quickly but I hear it in slow motion. Grace's back and stomach were covered in hives. Giant hives-the size of quarters. Her cough was not part of a cold. She was now wheezing. She was having a severe allergic reaction.
I live a minute from school so I rushed up there. The nurse wanted to hit her with the epi pen and call 911. Here's where I slipped. I said no. I would take her to the ER immediately. There was some back and forth about this but I was insistent. This was a dumb move. School was dismissing and I didn't want Grace's friends to see her go out in an ambulance. I thought to myself, "I can get her to the ER in 5 minutes-faster than an ambulance." I can hit her with the pen if I have to. I know the school nurse well. I know she knows her stuff. I should have listened. Maybe in the back of my head I was thinking, "I give the shots." I honestly don't remember.
Grace was kind of loopy-for lack of a better adjective. She complained her stomach hurt while Luke kept yelling "go faster mom!" I silently cursed my environmentally friendly car and it's inability to accelerate at lightning fast speed. I tried using Siri on my iphone to text Tom but unfortunately Siri was busy or something because she "could not process my request." A failure of technology all around led me to use words that I hope do not find their way into my children's vocabulary.
We got to the ER and they took us right back. Grace's sugar was up to 385. In the back of my mind I'm thinking, "Who cares." But it sent the nurses into a tizzy. "When was her last insulin?" "We'll get an order for insulin to cover the high!" "What was her number this morning?" It took every ounce of strength to not freak the hell out on them. I know they don't see a sugar like that every day but DID YOU NOTICE MY CHILD IS WHEEZING AND COVERED IN HIVES????? We got back to a room and saw a physician's assistant. She rocked it. She wanted to give an epi shot immediately but she was as cool as a cucumber. Wasn't concerned about that 385. She told me to run the diabetes show. She asked a few questions to make sure I had it covered and concluded-let us know what you need. I agreed and began to realize I had just played with fire by not letting the school nurse give the shot.
An epi shot is a big puppy. It would make most adults cringe. I silently gasped. The nurse did not hide the shot from Grace who began sobbing "No more needles." I insisted they administer it in her leg. They wanted an arm but I told them the poor kid wouldn't be able to lift her arm. They got her leg ready and all I could see were all the little bruises on her leg from her insulin shots. Grace was sobbing harder but not fighting it. I surprisingly kept myself together.
They began talking steroids and I immediately remembered Grace's T1 friend William who had to be put on steroids and what a nightmare it turned out to be. His sugar was in the 500 range and he was in and out of CHOP. I paged our edno at CHOP and I knew by the way he picked up the phone the situation was not good. His voice was urgent-his voice is never urgent. We discussed the impact of steroids. He was deeply concerned for Grace and ran through what to expect for the next 24 hours (crazy highs). He concluded by saying try to push them to keep Grace off steroids and get him back on the phone if I had to. He also said to page CHOP allergy (which I did not). I can only handle so many CHOP doctors at once.
In the end, the ER doctor kept Grace off the steroids arguing more harm than good would come from it. We would wake Grace for benadryl in the night and take it from there. The doctor spoke so softly to Grace. I was surprised how much time he spent with us. His ER was hopping-it was packed with patients and people crying in the hallways. He spoke in an almost whisper-like voice saying he understood what a drag T1 is and a food allergy. He was trying to hard to make a connection to Grace but she just stared at the ceiling and nodded every once in a while.
We walked out of the ER and Grace told me she likes CHOP's ER better. They have more games, check in on you more, and have better TV. And boom-she was back to normal. Squealing and laughing on the way home, demanding I play her music on the radio-while I stared numbly out the window.
I apologized to our school nurse and explained that I basically panicked. She completely understood but we both agreed that if there is a next time, she's going to administer the pen shot. In the end, no one is really sure what happened. There may have been peanut in the lunch. Or, it may be a new allergy. On Friday we go back to CHOP allergy to discuss what happened and maybe run a few more panels to see what's up. My take away from all of this is to give up a little of the control I have over Grace's health. I also took away a realization of just how many people care about Grace. Our school nurse called twice while we were in the ER to check on her. Her endo checked in all weekend by email to see what her numbers were doing and offer advice as to how to adress the highs and lows we were seeing. Her pediatrician received the ER report and called on Tuesday to make sure we were all ok. In summary: give up some control and let the people who care about Grace and have the medical training to help her do their job.