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Wednesday, July 3, 2013

PB Challenge Gone Wrong

Yesterday was one of those days that only our family seems to have. I'll set the stage for you. At 9:45 Monday night, Aidan popped out of bed, saying he was done sleeping and needed to watch TV. I have been exhausted lately because of lack of sleep, days of neuropsych testing for the boys, among other things, so I was already in bed getting ready for sleep. I turned off the light and insisted Aidan just go back to sleep. If it was in our bed that he slept, fine. So he did.

At 11:30 pm, Ella woke up. For the first time that night. I put her back to bed, laid with her for a while until she was asleep, then went back to my bed at 12:15. At 3:30 am, Ella woke again. I repeated the Back To Bed Fun that we have every night. At about 4, I went back to my bed. At 4:30, Ella came into our room. Again. She got in our bed. And didn't go back to sleep. 

The wonderful thing about being up from 3:30 am on is that you have PLENTY of time to shave your legs AND do your hair.

I know a medical professional who had what she thought were symptoms of a brain tumor or Alzheimer's, so she had neuropsychological testing done. They told her that she needed a nap. Literally. She was so exhausted from constant sleep deprivation that her whole being was suffering. I've survived 11 years of sleep deprivation, but it's getting harder and harder to keep going. 

I was beyond exhausted (and not just a little crabby) yesterday. I felt sick and migrainey and very irritable. And so did my daughter. Alex wasn't going be home until who knows when yesterday because he got to go to a baseball game with friends, which I am glad about. He never gets to just spend time with friends, hanging out. But I felt sad for me. Because it was a long, long day.

Ollie had a grooming appointment early in the morning, so we dropped him off before we started our day. We made it through our morning therapies, and I was grateful to see the faces of our sweet therapists. They always make me feel hopeful and sane. They listened to my Ella Sleep Woes, like they always do, and had some suggestions to try, like they always do. They were bright rays of sunshine in my tired, gray world today. They must have known that they would need to pick me up and spur me on today, because they both wore the most beautiful colors of clothing I've ever seen. 

You can tell I'm pretty loopy when even the colors of our therapist's clothing make me feel like crying because they were so beautiful and joyful and just made me want to hug them. Which I didn't because in my emotionally and physically fragile state, I would have dissolved into a puddle of tears and never recovered.

Then we picked up Ollie. (And went to buy some more fabric for the quilt that I'm making. Don't tell the Budget Master.) We got home for lunch, which only half the kids ate because that's how life goes here with eating. You never know who will eat what or when. I told the kids I had to lay down to rest because I was feeling so sick. 

They only woke me up 5 times in an hour. 

Then Jonah and I had an allergist appointment. It was my yearly checkup so that I could tell the allergist what I tell her every year- my allergy meds don't work. And she could tell me what she tells me every year- I need allergy shots, that's the only thing left to try. Like I have time for that. Ha.

Jonah was going to do his peanut butter challenge. His blood and skin tests have come back negative, so he was supposed to go into the allergist's office and eat a bunch of peanut butter and see if he had a reaction. The idea being that if he did react, he'd be in a safe place with medical help available. We all thought Jonah had outgrown his allergy, and were pretty excited to do the challenge. I brought all the kids since I didn't have a babysitter and Alex was at work. Aidan was too nervous to do the challenge, even though his tests have come back negative also. I thought having him watch Jonah do the test would be a great idea so he could see how everything would be ok. This would hopefully give him confidence to do his own peanut challenge sometime in the future.

Jonah started by eating a fourth of a peanut butter cup. Faced with the candy on the plate, he wasn't too excited all of sudden. In fact, I could tell he really didn't want to do the challenge. But we all encouraged him to try, and he did. He said the candy was terrible. (I should be so lucky as to think the taste of peanut butter cups is disgusting!)

I had brought the other kids some candy to eat in solidarity with their brother, so we had a little candy party. We waited a half hour. Jonah didn't have any symptoms, except anxiety. Extreme anxiety. 

Next Jonah had to eat a half of a peanut butter cup. He really didn't want to. Again, we encouraged him. By this point, Jonah's brothers and sister had huge sugar rushes and were bouncing off the walls of the little office like ping pong balls. Fun stuff. 

A few minutes after eating the peanut butter, Jonah said his eyes felt itchy. Then his nose got stuffy. Then he sneezed twice. Then he said his throat felt itchy, at which point the doctor brought him some antihystemine. Then Jonah started getting hives. Then his throat felt like it was swelling. At which point the doctor called off the testing and brought in an epi-pen. Which made all my children totally freak out. Ella and Aidan sat in their chairs, plugging their ears and whimpering. Ben was so sweet and brave, and did what he always does when one of the kids has an emergency- he took care of the rest of the kids for me. He asked them if they wanted to go out to the waiting room with him. Mostly, I think, because he didn't want to see his twin have to deal with what was coming. Aidan and Ella were very relieved to have Ben take them out of the office. I said yet another silent prayer of thanks for my sweet Ben.

Then we all turned to Jonah, who was a complete mess at this point. He was petrified of the shot, totally freaking out about his allergy symptoms...so the doctor and I held Jonah still while the nurse gave him the epi-pen. He immediately started feeling the medicine take effect, which gave him hope that he was not, in fact, going to die. His nose un-stuffed, his eyes stopped itching, and his skin began to lose its bright redness. The other symptoms started going away after a few minutes. Jonah got very pale and weak and jittery, and his heart beat was very fast, but those were all things you can expect when you have an epi-pen injection. It was better than his throat closing up.

The doctor came back to check on Jonah every few minutes, and said she has never ever had this happen before- where someone tested negative for an allergen and then had a reaction like Jonah did when they ingested the allergen. We laughed when she said, "Only your family, Carrie." Yep, that's the way we roll around here. Out of the ordinary, breaking the Rule Of Norm. And not always in good ways. 

Jonah got to follow up the epi-pen with some oral steroids, to make sure all his symptoms stayed gone. We all started relaxing a bit as Jonah returned to normal, and because the kids felt such stress relief when they saw their brother would be ok, they went even more bonkers. In that tiny little office. We actually all (yes, even Mama) got a big case of the giggles, despite my trying to quiet everyone down, and I'm sure the doctor was quite happy to see our family walk out her door. When intense stress is suddenly lifted, our little family tends to laugh with joy. And giddiness. And we usually can't stop. And the more I try to quiet us all down, the louder we all get, for some reason.

Our disgruntled, worn out little tribe got home, got dinner, and I got the kids ready for bed. I still felt terrible, but you have to do what you have to do when you're the only parent home. The kids went to bed early after the intense day they'd all had. I went to bed early too, because I felt horrible. Just as I was about to turn off the TV and go to sleep, much earlier than usual in an effort to get a few really solid hours before Ella's wakefulness started, Jonah woke up. He came in our bed, and cried and thrashed in pain from where he had had the epi-pen injection. So I got him Tylenol. And an ice pack. And Melatonin to invite sleep faster. And lavender essential oil for his pillow. And my iPod and earphones so he could listen to relaxing music. I held the ice pack on Jonah's sore arm. I rubbed his back. I soothed him the best I could.

The thing that always pierces me to my core is that my kids always say "Thank you for taking such good care of me, Mama." Oof. Right to the heart. They are such grateful souls and I love that about them.

See why I never get rest? What can you do if your kid needs you? So after a few hours of Jonah's angst, thrashing, and anxiety that his allergy symptoms would come back and kill him in his sleep, along with his high level of pain, he finally fell back to sleep. I slept for an hour before Ella decided to wake up for a few hours. 

As I laid in the dark, first comforting Jonah and then comforting Ella, my tears just kept leaking out. I'm so worn out. And I felt so bad that we always have crazy things like this happen to our kids. Nothing is just easy and normal, it seems. My kid was supposed to not have an allergic reaction today, but he did and it ended up to be scary and traumatizing. (Which, by the way, did NOTHING to convince Aidan to do the peanut challenge. Ever. Which is fine with me.) My toddler is supposed to know how to sleep through the night by now. But she doesn't. 

I used to think it was a coverup when I'd hear that celebrities had checked into a "clinic" for "exhaustion." Ha. What I wouldn't give to "check into a clinic" myself right now. Exhaustion is real. It makes you feel like your insides are disintegrating and your brain is turning to snot.

Today my body gave out. I felt absolutely terrible, so I had to ask Alex to stay home and do The Kid Thing. I couldn't even get out of bed I felt so miserable. This does tend to happen to me- I keep going at an insane pace without true rest until my body gives up and I get sick and have to stay in bed for a day. I took gobs of migraine medicine, which seems to have helped. I stayed in bed all day. (Except to do two loads of laundry because Ella is running out of underwear because she keeps having accidents and find Aidan's shoes so he would get his tushy in the car for therapy and feed the dog and take the dog out and give kids meds this morning...) I took a short snooze. I feel like I'm on the mend. My head doesn't feel crazy and throbby anymore, so that's a good sign.

The things that have happened this week continue to remind me that there really is no "normal." And that you should never take anything for granted. The allergist said many other doctors she knows have their patients do allergy challenges at home if their skin and blood tests come back negative, but since she's a "nervous nelly" she likes to do them at her office. I said a sincere thank you. I would not have liked to have had that experience at home with Jonah, all on our own. 

We are armed with new epi-pens for Aidan and Jonah. And the knowledge that although trace amounts of exposure for both boys are probably fine, Jonah for sure, and probably Aidan too, are still in the Allergic To Peanuts category. It's good to have knowledge. And it's good to be able to have a husband who is capable of being there for our kids so I can "check into my clinic"- my bed- for a day.

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