June 13, 2013

Number 16

   Did I ever tell you that after Sadie's last hospital stay we added yet another new Dr.?  Yep, Dr #16. It is a pulmonologist, a lung/breathing Dr.  Since Sadie was diagnosed with the central apnea, they decided it was best to get a pulmonologist on bored with her care.  I agreed originally when we were in the hospital, but the closer the appt came the more I thought, no, we don't need another Dr.  We don't need a lung Dr., this is an issue with her brain.  But then again, I thought, she did have 5 months of having some sort of respiratory infection so maybe we should see them.  I decided to keep the appt and see what they have to say.
   Yesterday we went to this new Dr.  It was an uneventful appt, thank goodness.  The Dr really didn't have much to say, just told me the plan for the next year.  Sadie is going to have a home, overnight pulse ox test done sometime in August or September to make sure that the oxygen is doing what it's supposed to be doing and keeping her blood oxygen saturation up at an appropriate level while she sleeps. The other thing that we will do is have another sleep study performed sometime in the spring.  I don't really know why this is the protocol, but this is what they usually do.  I guess to make sure the first test was correct or to make sure that the child hasn't moved into obstructive apnea, too.  Who knows?!  But we will have another sleep study next March or somewhere around there.
   We also discussed all of her respiratory issues that she had over the winter.  I generally will not tell Dr's my thoughts about a situation or what other Dr's thoughts are about a situation unless the Dr that I am currently speaking with has no clue or thoughts about the situation.  I like to hear their thoughts and to see if they match that of others.  Luckily, she had the same thoughts that I do about the whole thing.  1. Given her brain malformations and the diagnoses that go a long with that she has a poor immune system, hence she will be prone to infections.  2.  Given the mito disease, her lungs are effected by not having the mitochondrial energy to breath deep enough to be able to clear her lungs.  3.  Because she has the hypotonic muscles in her core she just simply can't take deep breaths because her muscles are just to weak.
   Unfortunately, there is nothing we can do about any of those things.  So what can we do?  We are going to get some pulmonary function tests on  her (performed during a healthy time).  That will give us a baseline of how deep her breathes are, how much effort she is giving to breath, how much air is actually being exchanged, etc...  That way when she is sick, we can run the same tests and compare them.  The second thing that we will do is start to perform chest physical therapy.  All this consists of is "burping" her hard in different spots on her chest and back a couple of times a day especially when she is sick.  This just helps to move around her secretions so she doesn't get pneumonia.
   That sums up that Dr's appt.  Sweet and simple.  As much as I didn't want to add another Dr, I guess we are going to continue to follow with this Dr for at least another year.

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