New breathing issues

  While we were in the ER it was discovered that Sadie was having irregular breathing and unexplained oxygen desaturation.  This was one of the reasons that they decided to admit her.  She has not had issues with this in the past except when she has had respiratory infections.  They checked a chest x ray and that was clear of any infections.
  They came up with a few ideas.  1. Was her brain atrophying (shrinking)?  Her underlying brain condition can cause this and mito disease can cause this.  So unfortunately this is a very good possibility. To check for this she would have to have an MRI.  MRI's take a long time and she would have to lay very still.  For this to happen she would have to be sedated.  Sedating Sadie is very dangerous, because she is at high risk for malignant hyperthermia.  Since she had just had surgery on her ear, the Dr's (and I) felt like it was too close together to risk her safety at this point in time.  The MRI was out (for now).  Plus the fact that she is progressing in milestones we are taking this as a good sign that her brain is not atrophying.  2.  Was she having absence seizure?  This is definitely a possibility.   To check this idea we would need to get an EEG.  A long EEG.  The ones we have had in the past have all been less then an hour long.  At this point in time the Dr's want to wait to test this theory.  The last EEG did show changes in her brain waves for the possibility of seizures so they want to take this time to explore other possibilities to rule more things out.  3.  Is she having apnea?  If so, what kind?  The Dr's and I decided to explore this possibility.  A sleep study was ordered.
 

 

 

   The sleep study results showed that she has central sleep apnea.  Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing.  They tested/recorded her for approximately 8 hrs.  In those 8 hrs, she had 6 pauses that were greater the 20 sec.  The rest of the pauses were shorter pauses, but more frequent.  They also discovered that her breaths are very shallow when she is breathing.  With a combination of the pauses, shallowness, and frequency she is unable to correctly blow off her carbon dioxide and exchange it for oxygen.  They call it sleep apnea, but it is also happening during her awake time too.  The difference is since there is so much going on around her she triggers herself to breath with all the activity.

  Unfortunately, there is nothing we can do about this.  The breathing center in your brain is located in the medulla oblongata, which is located right below the pons.  We already know that her pons is small, the chances of her medulla oblongata being affected by this is a very good possibility.  If we got an MRI we could get a better pic of this area.  But as I said before, it is not worth the risk at this moment in time.  It is believed that she has probably had this issue since birth, but it was exacerbated by her 2 infections.

  What can we do?  We can give her extra oxygen at night.  No, this will not change the fact that she stops breathing, but what it will do is give her more concentrated oxygen straight into her nose to help compensate for the carbon dioxide that is not being blown off.  It will help deliver more oxygen to all of her organs.

  What else can we do?  We can thank God for every breath that this little girl has been given and continues to be given and pray that her brain triggers another breath.