Friday, February 24, 2012

Deep Breathing

Experts say that deep breathing is one of the best exercises for staying calm and relieving stress.  Sure, it works, but so does driving down the Thruway with the radio blaring. Which happened to be the best medicine for me Wednesday morning.

It had been a long night with Paige, her fever had continued to spike over 104 even with medicine.  Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way.  Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work.  Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.

High temperatures are frightening.  Even after popping her in tub, her temperature only fell a few tenths of degrees.  In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her.  The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!"  Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be.  Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend.  Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.

To say I was looking forward to a nap not long after I awoke the next morning was an understatement!  Still, I was pretty happy that after three days she was actually asking to eat.  I didn't care what she wanted, I would make anything.  After polishing off two plain pink pancakes she scurried off to play with her sister.

Balance was returning to our house when the phone rang.  It was our immunologist.  I was caught off guard.  Shouldn't examining the specimen and running tests take longer?  I knew she would be calling, but in my mind I was prepared for a call in the afternoon.  Without hesitation, I was informed that due to the biopsy findings the game had changed.  The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.

CGD, or Chronic Granulomatous Disease is now the illness they are considering.  Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant.  Luckily, the test for this disease could be done here in Buffalo.  We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells.  If we went today, we would know by the end of the week.  Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.

On my way, my head was just spinning with a million what ifs.  The happy chatter from my little man only made my thoughts race faster.  How could any of this be?  Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life.  Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time.  Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.

My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way.  The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead.  Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.

As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well.  We would be optimistic and trust that all of this is happening for a reason.  I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water.  Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.

Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.

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