February 06, 2013

A breakdown and weights are lifted

  Yesterday morning I called to get Sadie an appt with her pediatrician for this stupid coughing/choking thing that she has been doing.  As the day went on though I realized that she was getting better, so I called back to cancel the appt and just ask to leave a msg for her Dr saying that I want suction ordered and questioning if she needs to see a pulmonologist.  The girl that answered the phone said "you have to be seen to get home equipment".  I knew that she was trained to say this, but I also know the relationship I have with the Dr.  If I say something is wrong with one of my girls or that I need something for Sadie, generally she listens and gives me what I want.  I did not really feel like arguing with this girl and a small part of me was curious about what her oxygen level was at while having a cold.  So I kept the appt and off to the Dr's we went at 7:30 at night.
  They checked her vitals first.  Oxygen was at 86%.  That's not good.  I told the MA the machine was not reading her oxygen correctly and to do the rest of her vitals and come back to it.  Sure enough later it was at 96%, perfect for her.  They also weighed her and it said Sadie had gained 4 oz.  The dietition was thrilled with this.  I did not feel like getting into the weight issue so I did not tell her that she just got done eating 4 oz about 5 min prior to this weigh in and the weight probably was not accurate.  Then again, who knows maybe it was a "real" weight gain, who am I to say it wasn't.
  A few minutes go by and then in enters the Dr she takes a look at Sadie, looks at me with a confused look.  She states "Sadie, looks good, sounds good, and from your report she is doing good.  So why are you here?"  I told her I wanted home suctioning, and a pulmonologist consult.  She said "you could have left me a msg about this stuff"  I said "I know."  She said "the real reason?"  I started crying my eyes out.  I have no idea where they even came from.
  What is wrong with me these days?  I am an emotional mess.  I hate it!!  I have never been like this my entire life until Sadie came along. Maybe this is God's lesson for me, teaching me to show more emotion.  I don't know.  The poor Dr. I'm sure she was not planning on having an emotional mess for her last patient of the day.  She let me cry and then there was silence.  Finally she said "It's about time you lose it.  I've been waiting 15 mo for you to have a breakdown. No one can be this strong forever".  All of a sudden all these words and thoughts and feelings came flying out of my mouth.  I told her how I feel completely alone when it comes to Sadie's care, no one seems to know anything about her "conditions", but yet no one seems to do research on their own to know how to care best for my little girl they depend on me to fill them in and even though I am knowledgeable I am not a Dr., and if she does get sick I do not have the confidence that anyone would know how to care for her, because no one cares to get to know anything about her and I will be damned if any one Dr is going to blow her off because she has special needs. I already have had one Dr say to me "not sure what all you want to do for her cause of her special needs and her outcome" I am sure it was not meant the way it sounded, however, I will never go back to see him (it's a shame, I liked him too).  I told her I was frustrated because we do not have definitive proof that she had mito disease, yet we blame everything on it.  What if we are missing something because we just blame it on mito and in reality it could be fixed if we would have looked for the real cause.  What if we say she has mito and she doesn't and her cardiologist will not do her heart surgery because she has mito.  She could end up having a "broken" heart forever and for no reason.  I have had all sorts of issues with this stupid muscle biopsy (which I will write about in another post) and I feel like no one is helping me with that issue or helping me to find a new neuro Dr or a mito specialist.  I have done all the work and I do not feel like that is my job.  That is the Dr's job.  She is supposed to pull everything together, not me.  I told her that I am afraid that I am missing something.  That in the end I do not want to have any regrets that I did not do everything and more for her.  I continued to go on and on with all my concerns and she just listened to me.
  Finally I was done.  I pulled myself together and looked at her.  She said she was sorry that I felt that way and that she feels like she has failed me and she will help me more (I felt horrible that I made her feel that way, that is why I keep my mouth shut, for that exact reason).  She also stated that of all her patients she has a handful of parents that are "real", and I am one of them.  Not exactly sure what she meant by that, but I took it as a good thing.  She said there is "no way that you should ever feel like you did not do enough.  Sadie has had more Dr's eyes look at her, more tests run, and more love shown to her in the short 15 mo of her life then some people have in their entire life.  I am pretty darn sure there will be no regrets, ever, when it comes to this beautiul little girl".  The Dr also said that she will look into some of these Dr's that I have found, see what she can find out and if they are not the right fit then she will look for Dr's that are the right fit, she promises "I don't want to let you down again".
  Even though I really had no point to go to the Dr anymore cause Sadie was doing better, it was not a complete waste of money.  I got a couple of weights lifted off my shoulder (at least temporarily) and hopefully more help from the Dr.  We will see if anything changes, but at least for tonight I feel a little better.

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