01 September 2009

Frustration

A sense on frustration looms over my home today.

Lil Miss as I mentioned before has some developmental delays and recently I was able to get hooked in with the Child Development Centre for supports such as physio therapy, occupational therapy, speech therapy and a teachers assistant for school.

When meeting with the teachers assistant it came up that Lil Miss sometimes turns blue. The assistant asked me if this was something that we would need an action plan for, not being sure though, a nurse was referred to speak with me about developing an action plan for school or if one would be necessary.

The nurse said it's not normal for her to be having these episodes (no kidding!) and asked what I did when Lil Miss would begin to go blue. When I told her she said that only works for respiratory issues not cardiac so they don't work.

You should know I have been constantly bringing this to the pediatricians attention since Lil Miss was born. It did appear 4 years ago to be connected between the respiratory system and the heart. Back then she would have apnea (or stop breathing)when her heart would become bradycardic (essentially start to crash). Now however her breathing is fine when her heart rate drops dramatically causing her to turn blue.

A child's pulse rate for her age should be between 80 - 120. During one of the last major episodes during recovery of the worst of it her pulse was at 72 for about 1/2 an hour.

Of course I went back to the Dr who referred me to a pediatrician that I can't see until the end of September. This same pediatrician who has brushed me off for years now. I will not be leaving her office until I can get a referral to a pediatric cardiologist, just the way the chain of command falls.

This morning the CDC called me and said I need to have an action plan in place for if she has an episode at school for the TA to work with her. Only the nurse they set me up with said the only tools I have to deal with this are for respiratory not her heart so I can't write up an action plan can I?

4 1/2 years of bringing her back time after time looking for answers and brushed off every time. Now finally we get hooked in somewhere where issues have been identified and there is help available only to feel like it is being taken away because no one took me seriously before.

So it is action time. I will drive for 2 hours if necessary to go to Children's Hospital where there is a pediatric cardiologist and go to the emergency room and tell them she turned blue. At least then I can talk to a Dr that can give me an action plan.

1 comment:

JP Shaw said...

And I will watch you drive away and wave ... lol with my prayers in my heart for you. I will also watch mister and don't worry it will all get worked out hun.

The worst part is feeling crazy when you know they won't listen and think you are nuts always making you second guess yourself.

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