Saturday, April 5, 2014


So, I started this blog post Thursday the day took a turn for the worse with doctors not talking to each other I used the blog to get out my frustration...thanks for listening.

Let's try again.

The last two weeks gave us a reminder of how very sick Jacob can get due to his mitochondrial disease. Friday two weeks ago when Jacob was rushed in an ambulance with sirens on all the way to Children's, I didn't know if he was going to be able to fight through yet another crash to his body or if this was it. I knew Dr. E. felt the same way.

This snowy Thursday morning, I am once again sitting in the hospital chair with a cup of hospital coffee next to me. I do have my boy next to me in his wheel chair watching NBC morning show as big wet snow flakes are falling to the ground. Going on week three in the hospital, I am eternally grateful that Jacob was able to fight through sepsis and extreme withdrawal of stress steroids.

This is what I've learned:
  1. These really hard times make me appreciate my life so very much. There is really no time to sweat the small stuff when you are fighting with your boy for his life. That gives us a lot of happiness in our day to day life as weird as it might sound.
  2. Sleep is not to be underrated. I can operate well on a few hours of sleep, but when you are loosing several nights of sleep mixed with worry, it doesn't make for a pretty me. My brain looses its' edge, and I snap. Yes, I snap for the little things, and have no patience for how absolutely disgusting the bathroom is in the PICU or how many times I woke up from a beeping medical pump.
  3. The nurse of the day or night can make a huge difference to our day. If I get that brilliant nurse who knows her stuff and also really cares about my boy, I am in a good place. I can lower my guard, and let them take charge rather than me hovering over them making sure they are doing all the things they should.
  4. I love my work. In the middle of crisis, I am so very happy that I can escape to the world of work that I know so very well. As I train people, I have to stay in the moment of the topic, and my mind can't wander off to places of respiratory distress, diarrhea, and myoclonus.
  5. I can't stand the flight for life helicopters. Every time it lands on the roof of the hospital, it gives me the chills. I know it is a very sick child in that helicopter, and I always say a prayer for the child in the helicopter and all the other children in the hospital including my boy.
  6. I need my girl. I love to be part of her middle school world and balance that with the hospital world. I missed her terribly when she was on spring break, and for the first time truly realized how important my time with her is when we spend weeks at Children's.
  7. My husband is my hero. He never looses his calm. He is sharing in all parts of a hospital stay from sleeping on the hospital couch to taking work calls from the hospital room to advocating for Jacob at all hours of the day.
  8. I need to surround myself with positive energy. In the middle of crisis, I need to find laughter and little pockets of joy. So many here at Children's are our friends now. They care for our whole family, we are especially close with the PICU staff. I love when the attending finds time in the afternoon to sit down with Jacob and me to chat about this or that. I love our community of support who never fails to get us going. It could be a bear hug from a close friend, an uplifting message, a meal on our front porch, and the list goes on and on.
  9. Do something for myself. Five years ago when Jacob came down with sepsis, I only left Jacob's room to go to the bathroom and never showered once. I have no idea how many hospital stays we have had since then, but I have learned the day will be better if I do something for myself. I always shower. I always eat (and treat me to the things I really like). I go for a run around the hospital.
  10. We're the lucky ones. It strikes me every time we're in the hospital. I never ever feel alone on this journey. Our family is far far away, but we have an amazing support system of friends, love, and strength. I love you all for that.
We're getting GI, endocrinology, neurology, and special care all in one room Monday afternoon. I hope it is then time to take our boy home. I've learned that there is nothing like having us all four under the same roof.

Love, Maria.

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