One Week

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In seven days I will meet Brian’s doctors.

I am cautiously optimistic.

Don’t get me wrong, I know that coming to Philadelphia is the best course of action for Brian, and for me.  I know that I will walk away with a greater understanding of Eosinophilic Esophagitis, and hopefully, a plan.

I have done my research and I know I am going to meet some of the top doctors, and even more so, work with people who know what they are doing.

The problem is, I have dealt with doctors who pretend to know what they are saying.  I have met some who talked about a “plan” but never followed through.  And, I am “that person.”

Have you ever met someone who may be on his/her deathbed, but he/she still doesn’t go to the doctor, because maybe he/she isn’t sick enough?

I know that Brian is sick (even though right now he looks perfectly healthy).  I have seen the test results to back up the diagnosis.  Even with that knowledge, I still worry if these top doctors will think I am overreacting.

But I’m a parent…what parent doesn’t overreact?

When Addi was little, I heard one too many times, “Oh, this is your first?”  Nothing would illicit a deep rage like that ridiculous question.  Maybe with my first I was too cautious at times, but I always told Matt I would rather pay a copay and have peace of mind, then to take a chance and risk my child’s health or safety.

I know that in one week I will have to put my big girl pants on and fight for my child.

The Children’s Hospital of Philadelphia’s Eosinophilic Clinic has a waiting list.  The fact that Brian has an appointment has to mean that they felt he was worth being seen based on his medical records.  Otherwise, if it wasn’t a big deal, then I would be waiting for a call that an appointment opened up.  This is the rationalization I have told myself.

Still, my heart pounds when I think about sitting with the doctors and being told that he isn’t that bad, or that they don’t believe he is really sick.  This may all stem from the fact that I have heard these sentiments before.

Doctors questioned why I was even there and then used wording and punctuation in Brian’s medical records to insinuate that Matt and I were not being truthful.  These past events have led Brian and I to travel across the country for better care.

This morning Brian woke up with hives around his mouth.  I don’t know what caused them or what to do besides forcing medicine down his throat.  The majority of my days involve reactions of one kind or another.  I know Brian is sick; now I just have to make sure his doctors see it too.

Over the next week I will reread Brian’s medical records, jot down even more questions, refer back to my daily food log, browse through the many pictures and videos documenting reactions, and prepare myself to advocate for Brian.

After all, isn’t that what all overreactive parents do?

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2 thoughts on “One Week

  1. You are your child’s best advocate. You know when something is not right offer that nope can be done. I had the same fears and worries. In the end…I found the best team for her care. I pray for you and your family that everything goes well and have a plan to strive for. Stay strong for your son and yourself.

    Liked by 1 person

  2. Oh my sweet girl, I wish I could be there with you when you see the doctors, even if it’s just to give you a big hug. 🙂 You are such a wonderful mother. I wish I was half the mom that you have been to Addi and Brian. You do so much for your family and always put yourself last. Brian is in good hands with you and will soon be with his new doctors. This will all be worth it and you and Brian will be home soon. I love you beyond the moon and stars! Mom

    Liked by 1 person

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