Battles against terminal illness, anxiety, and life!

Days

I was dreaming of sandy beaches and umbrella drinks when something jarred me from a blissful sleep.  I probably wouldn’t have remembered the dream come morning if I hadn’t been awoken in the midst of it. Alas, Braden’s arm had wrapped around my arm and nearly scorched it. On instinct, I reached for the thermometer on the nightstand and put it under his armpit.  Unaware of the lapse of time, the beeping brought me through.  Using my phone as a flashlight, the thermometer said a blazing 103.8.

Suddenly wide awake, I sit upright and Justin senses the shift and starts removing his sleep apnea mask. I pour out Braden’s Motrin, and begin the dance that is all too common among parents of children with A-T (Ataxia-Telangiectasia.)  The dance is to determine what is the best course of action for our children.  There is no black and white, but a thousand shades of gray.  Do I call the pediatrician and ask him what to do?  Do I just wait and see if the Motrin brings the fever down? Do we just pack up and head to the emergency room?  What to do? What to do?

In the end, I called the pediatrician on call, and then packed up and went to the emergency room at his suggestion.  Texts went out to my parents and to the amazing S. My father came and watched Genevieve.  It’s rarely said, but I often feel sad that she misses out on attention because of Braden’s high level of care.  We work hard to make her know how loved and special she is.  Oh, she knows it, and so I know I am doing my job well. Regardless, I had to leave without kissing my baby girl to go and take care of my baby boy.  Neither situation made me smile.

It was an anxious drive to the emergency room. Neither Justin nor I really knew what to expect.  Is this something?  Nothing?  Just what is going on with our son?  It’s a scary way of living, but each day you just don’t know what is going to happen. Any given day could bring a sharp decline in our child’s health.  Although we do not live as if we are waiting for the other shoe to drop, we do have to be emotionally prepared for whatever may come our way.

We were a bit concerned about the level of care we received today at our local hospital.  While I believe it is a good hospital, I feel that we weren’t taken seriously.  The doctor made no attempt to understand what A-T is, whether or not there was any correlation between what was happening now and the condition, and to do any investigation further than some simple blood work.  *sigh* After a bag of IV antibiotics, we were discharged with the diagnosis of  “fever” and secondly “Ataxia-Telangiectasia.”  Really?  You have got to be kidding me.  I expected more from a pediatric emergency room.  Instead, we were given the boot and told to meet up with our pediatrician for a follow-up.

So, off to the pediatrician we went.  I was pleasantly surprised with how thorough they were with us.  We’d been up since 3:30, Braden’s fever hit almost 105, and we just wanted to know what our child is facing. While we never did figure out the answer, we did make the decision to start ruling some things out. We painfully waited for the results. 

We can now say he doesn’t have lymphoma or leukemia.  What a relief!  Yet we are still left with all this gray.  Our dance continues. Our minds dance with answerless questions.  Is this just his compromised immune system fighting hard?  Is it a random virus that he simply has no other symptoms of?  What is going on with our child still remains unanswered.  It’s simply a constant reminder that parenting our son is not for the weak.

Tomorrow we go for round two of IV antibiotics. Will we get our answers?  Probably not. So we just remain thankful that whatever the cause was, he managed to move past it.  We continue to enjoy the happy moments and breathe through the tough ones. We appreciate all the amazing friends and family that surround us with love and give us added strength.

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Comments on: "Days" (4)

  1. I am relieved for all of you.

    I want to be able to support you and be a good friend, even remotely (i.e. Since we don’t see each other in person). I’m not afraid to speak with you about A-T or pretend it doesn’t exist…still, I wish I could do more to support you, both when a crisis is active, and when the kids are tucked in and it’s just you, your pillow, and the tears. I cried as I drove home from work today, thinking of your fear, your frustration, and wondering what I could be doing that is helpful.

    Will you please give it some thought, and consider a post in the future on this topic?

    Wuv u.

    Will you

  2. I’m sorry you deal with that crap. 😦 My thoughts are with you all. And you very beautifully make us understand your world. Your goal of helping people understand A-T is very well met in my opinion.

  3. I wish there was more I could do for you than send you good thoughts and words through the computer. I’m sure it is a relief that they have ruled out some scary things as the cause, but it can’t be comforting that the cause is unknown. Is it common for A-T kids to have unexplained fevers?

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