February 05, 2013

And off to the Dr's we go

  Well things aren't as bad as I thought they might be.  Chloe ended up just having a little GI bug that only lasted Friday and Saturday.  She went back to school on Monday.  Aubrie went back to school this week (thank you Lord! she was driving me crazy after being cooped up in this house for 2 weeks).  I ended up losing my voice and having a terrible cough and my husband had just about the same thing.
  Then we have Sadie.  My poor little girl.  She is not nearly as sick as she was last time.  No fever, no seizures, and she is tolerating her food just fine.  However, she has this cough.  A cough that goes on and on and on to the point that she can't breath and turns all red.  Then when the cough part is over she has so much mucus/saliva in her mouth that she starts choking.  Since she doesn't use her mouth/throat muscles for eating/swallowing, she doesn't know what to do or the muscles are too weak to initiate the correct response to "stuff" sitting in the back of the throat.  Unfortunately, there is not much I can do.  All I have is a little bulb syringe that barely can get anything out.  Useless!!!  I can turn her over and pat her back, but really that doesn't do much either.  So I sit and "watch".  Hoping that what I can do or have done is enough.  So far she has always pulled herself out of it, but still I find myself holding my own breath until the episode is over.
  What I need is suction at home.  I asked for this last time she got sick and we were in the hospital.  They told me that they only ask for this for kids that have trachs.  Well, this weekend I met a little girl that had some special needs and she had home suction and she doesn't have a trach.  Guess what this mama is going to be requesting again?!  So we are off to the Dr's this afternoon for me to plead my case and prove to the Dr that we really need this at home.  This would make her respiratory illnesses go a little easier for her.  These coughing/choking episodes suck the energy out of her.  She has probably been awake approx 20 hrs since Friday morning.  That is a lot of sleep.  She wakes to cough/choke and then goes right back to sleep.  Hopefully, my case will be heard and I will get what I want.
  My second reason for seeing the Dr is to ask if she thinks we need to see a pulmonologist (lung Dr).  Not that I want to add another Dr to her list, but this is the 3rd respiratory infection she has had in 3 1/2 months.  Is it because of her underlying conditions?  Possibly.  Is she just not fully getting over the infection to begin with? Possibly.  Is it because she is aspirating (inhaling fluids) into her lung? Probably not because she has never had pneumonia.  Chest x rays always show that her bronchioles are inflamed.  Is she just going to be more prone to lung infections?  Seems like it.  Ok, fine I will except that this is her. However (there is always a "however" or "but" isn' there?), somewhere around her turning 11 months or so my husband and I have noticed that every once in awhile you can hear and feel something in her chest cavity.  It feels like two things are rubbing together and causing friction and it sounds like a stomach growling.  But it's on her sides under her ribs.  It's super weird.  I've mentioned it to a handful of her Dr's and they all look at me like I am crazy and say they have no idea.  Of course it doesn't happen while we are at the Dr's.  And it doesn't last long enough for me to record to show it to the Dr.  So I am the mercy of finding a Dr who may know what I am talking about.  So that is my other reason for wanting to see pulmonologist.
  We don't go to the Dr's until 7:50 tonight.  Her pediatrician has the craziest hours.  So I will let you know later what is decided.

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