March 10, 2016

Two Appointments

  At some point in Sadie's month and half of being sick we managed to venture out on her "good" days to see a couple of Dr's, the neurologist and pulmonologist.  Appointments I had been anxiously waiting for since her results from her last sleep study.
  Neurology appointment:  With such a huge change in Sadie's breathing while sleeping, there was a thought that maybe this was regression or deterioration of part of her brain.  That was my main question for the Doc.  After an examination (one that Sadie slept a majority of) and a million questions. It was determined that it was not deterioration.  She is progressing too much in too many other areas for that to even be a question.  Although he really couldn't answer my question as to why her sleep apnea has gotten significantly worse.  We both hymned and hawed over doing another MRI of her brain, but we decided against it.  I'd rather save more radiation to her little body for when something major or a significant event happens.  Over all it was an uneventful appointment but reassuring that he didn't think it had to do with changes to her brain.
  Pulmonology appointment:  This appointment I dreaded, but still really wanted to know answers about her sleep apnea.  I also was "happy" that Sadie was still sick cause I wanted to know her opinion on her lungs/breathing/overall respiratory status. The Dr examined her and said that her lungs were not really that "junky" sounding and that it was more of her upper airway. She just suggested the deep suctioning which is what i had been doing. So that was reassuring.  Then it was on to the main subject.  I think I asked her a bazillion questions, some questions that I don't think she was prepared for and kind of threw her a little bit as she stumbled for words/answers (but that's ok, it keeps her on her toes).  The two topics the we discussed: 1. Was the change as significant as the respiratory therapist made it sound when she gave me the results and 2. is there anything we can do about it?
  Was it as significant of a change as the therapist made it sound?  The answer, unfortunately, was yes.  The Dr explained that all of Sadie's sleep studies have progressively been getting worse, but this one was a huge jump.  A ratio (and no I don't know what ratio it is) doubled itself in 9 months and with that big of a jump it means that the oxygen that she currently wears at night is no longer triggering her brain to breath. Not good.  I knew what was going to come out of the Dr's mouth next.  Before she could say anything I asked her "are we at the crucial point that something needs to change or do we still have room to play with because I am dreading what you are going to suggest".  She paused (for quite a bit) looked over all of Sadie's test results from the last 4 years, "looked back at me and said "Yes, I feel like we are at a crucial point that we need to change something.  That was a pretty significant jump for 9 months".
  The plan:  Sadie is going to have another sleep study, but this time it is for her to trial a c-pap and/or a bi-pap machine for her to wear at night.  These machines do different things, but essentially the point is to "breathe" air into her when she doesn't take a breath on her own.  *sigh* I am truly dreading this machine cause i know that Sadie is not going to be happy with this mask over her nose, nor will she like the fact that she will have a much harder time flipping and rolling around in her bed.  But if we are at the crucial point, then this is what we are going to do.  We are just going to have to make it work.  The Dr did say that sometimes these machines don't help either, or the sleep is worse because of the fighting of the mask and at that point the mask is doing more harm then good.  But only trial and error will tell us what direction Sadie will go in.  So now we wait for the next sleep study.

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