29 September 2010

Scary words

So, it has been another long day.  Ben was a sick monster most of the day.  He seemed to get a bit better as the day went on.  Unfortunately, that did not last long.  My poor baby is just so sick and we cannot get a grasp on this whole thing.

I took him back to the doctor today. Dr. Lee saw us and was not happy with us.  She is feeling the same way I am these days.  What the hell is going on?  She is just as frustrated and has gone over all the usual suspects for this problem.  So, we are pulling out the heavy guns.  In we bring: ENT, Cardio and Pulmonary.  I am not happy about any of them, but if we have to do it, we have to do it.

It scares the hell out of me to use the word Cardiologist in the same sentence with my son's name.  I really want to have a perfectly healthy baby.  He has been so good this far.  I know that we will get it all figured out, but it is scary as hell right now.  SpO2 levels are in the low 90s but his heart rate is in the 140s.

Where does this put me?  I am in a lot of pain these days, but my child comes first.  I was feeling sorry for myself several months ago.  Now, I am worried to death about my child.  I am in pain, but I cannot imagine what it must be like for him.  Pain is okay, but when you cannot breath or your heart rate is through the roof, preventing you from doing things....that must cause serious pain.

I have been here on earth for 35 yrs, but my baby has only been here for 3 yrs.  Poor kid.  He has so much to look forward to...why does he have to be so sick.

The words cardiologist, ENT and pulmonologist are pretty scary when they are used in conjunction with your child's name.  It is also scary for me to think it could all be my fault.  Well, not exactly my fault, but could EDS be the responsible for my babies illness?

Lord, please watch over him and make him healthy.  I know it is selfish for me to want him here when his rightful place is with you.  I cannot change that fact....I really want him to be happy and healthy.  Please take him into your arms and do what you feel is necessary for the good of my child.


  1. ((((hugs)))) I'll be thinking of you and Ben.

  2. You are so not selfish.

    I know the words are scary but these professionals will care and try to help.

    Just posting to offer some virtual support and wishing Ben well.