SWITCH BUTTON

It's Sunday night, and Jacob's virus took a turn for the worse. Last night, he spiked another fever. This morning, we started to see a new type of focal seizures. After him not responding to diastat, we took another ride with North Metro to Children's. Our wonderful neurologist was all over it, and called the fellow neurologist before we even got to the ER. We were put on observations for 4-5 hours. Jacob was completely out of it, and took a long deep nap after 20 mg. of valium! I decided to also take a nap with him as we waited for more seizures to possibly start an EEG.
As the afternoon turned into evening, Jacob got worse not better. His cough increased, and so did his secretions. He was having a fever again, and his arms and legs were cold.
Tonight, we're back on the 8th floor again. We'll see how the week goes. I am not thinking we're leaving until we're completely over this illness this time - this back and forth business is just too tiring for all of us. Thanks Paula for being there today as I had to make a decision for the ambulance. I had a lot planned for the week with a company meeting downtown and work most days this week. I am simply not stressing out about it. I can't. One day at a time.
I also wanted to share my switch button thoughts. I wrote this on Friday night, but was too tired to post...
I sometimes feel I would need a switch button. I am leaving the world of the hospital in my car with exact doses of medications in my mind, a constant watch for Jacob's face color possibly changing, any sound of Jacob gagging in the back of the car needing me to pull over for deep suctioning in order for him to breathe. I am unloading the car with Jacob's hospital diapers, feeding equipment, medications, suction machine, kid cart, and our bags with overnight clothes. It's a couple of trips before we're in the door.
An hour later I am at Sarah's school Halloween party. Loads of people excited to celebrate Halloween. Many having the afternoon to dress up their kids and themselves in colorful costumes and make up, relaxed and ready to enjoy a party! I am happy Sarah has an easy fairy costume that you can dress up in in less than five minutes. Sarah is decorating her Halloween bag, and I can overhear conversations around me. "To have the kids home for snow day was tough.", "I can't believe it, I am still not sleeping through the night.", "I had the hardest time picking out the costume for xxxx this year.". When do you chip in and say: "My son had a full code in the hospital as your kids were playing in the snow.", "I don't know what sleeping through the night feels like.", "I didn't even pick out a costume for my son, since I knew it was 50/50 chance he would celebrate Halloween."
I need my switch button to easier go between the worlds of my two children.
Sarah who has a perfectly normal life for being a 7-year old girl. My Sarah whose life is focused on family, girl friends, school, activities, and her feelings being a seven-year old girl. Well, maybe not exactly normal...she does have periods of times where she spends a lot of time with friends, like yesterday's snow day that I so would have liked to enjoy with her. She had a blast with her friend Calla and her family, so I am not complaining, just feeling that I missed out on something very specical for her. And times when she has to endure the stress of her parents due to her brother's illnesses. A lot to carry for a little girl, but a pretty darn mature, insightful, sincere, and caring girl.

Jacob, who has not a normal 3-year old boy’s life. Jacob, who constantly live on the edge. Jacob, whose life can turn into a medical emergency any time. Jacob, who constantly needs our attention. Jacob, who this whole family is focusing around and has adjusted around. Jacob who is a true spirit, and someone who has taught me more about life than anyone I know. Jacob, our strong fighter, who we simply can’t get enough of.

But I do wish for a button to switch on/off between my two worlds.

Switch on for Jacob: I am home with my son who out of the blue gets an allergic reaction to one of his meds. Nausea, rash, extreme high heart rate, and diarrhea. I know we will have to go to the ER, if we can’t find a solution. On the phone with his neurologist trying to trouble-shoot what we should do next. Benadryl. It works. Phew! It worked! We avoided one ER trip. I hand him over to my husband to go and get Sarah from school.

Switch on for Sarah: Neurologist calls me as I stand outside school. Moms are chit chatting about this and that. I am on the phone with the neurologist trying to figure out what is truly going on with my son’s brain and what we will do next. Sarah comes out of school, she gets a hug, at the same time as I am still discussing exact increases of seizure medications.

Switch on for Sarah: It’s then time for a girl scout outing to a pumpkin patch. Switch on for normal life despite the normal world sometimes being hard to adjust into in the middle of a medical crisis. I am still exhausted from the drama with Jacob two hours earlier. It’s hard to talk about the weather and daily things. It’s hard to really feel sad for the frozen pumpkins out on the field. But I am enjoying to see Sarah getting lost in the corn maze, enjoying Sarah patting the goat baby, and simply spending an afternoon with her.

Switch on for Jacob: Jacob is resting at home. Watching for signs of the allergic reaction. Talking through new medication plan with Joakim to decide on next steps and actions to call the neurologist again.

I am not complaining. I actually think having a foot in both worlds is truly healthy for me, for us. I just sometimes need a switch to more easily transition between the two worlds.

Thanks for listening, Maria.