Naughty

Ellie was very naughty last night and stayed awake until 4 AM.  I think I better put her in time out when she wakes up.

Yesterday was uneventful.  Last night was uneventful.

They will hear the official reading of the sleep study this morning.  So far they opted to not change her settings.

We did go back down on her onfi dose (seizure med) that we had raised last week.  If we wanted to go even lower...the neurologist recommended taking off 5 mg per week.  She said she would keep it because of her underlying potential for seizures even if we aren't seeing them physically.  (Since the eye bouncing and desats they say are NOT seizures).  We'll see.  I should probably meet with her regular neurologist and see what he says.  We tried probably 10 different seizure meds when she was little and none helped.  Then we went years with no seizure meds at all.  Not that she wasn't having seizures...but for every new seizure med you try, the chance of finding one that will work goes down significantly.  So it was highly unlikely that we would find one that would help.  Then onfi was recently FDA approved, so we decided to try it.  It has been used in Canada and Europe for years.  I do think it helped with the night-time desats.  Which is confusing because if they are not seizures, why would it help?  I asked about other side effects of onfi thinking maybe we were helping something else without meaning to.  But the only side effect is lethargy.  I don't see how that could decrease her desats unless she needs to be more sedated for the bipap to open up her airway.

I have not spoken with her neurologist about it to see if they think it would help with Ellie's type of seizure activity, but I am highly interested in the new cannabais oil (as are lots and lots of parents with kids with seizures).  It has shown great success in controlling pediatric seizures.  It is made from marjuana, which turns everyone against it before they know anything about it.  Here in Utah, the oil is called "alepsia".  It will NOT cause hallucinations and can NOT be addictive.  It contains less THC (which is the part that give a "high") than hemp which can already be purchased legally in Utah (hemp oil and hemp lotion).  Cannabais oil is already legal in Colorado and 20 other states.  Utah would also have to legalize growing marjuana since the FDA still will not allow it to be shipped across state borders.  Here is an article from the Salt Lake Tribune about alepsia http://www.sltrib.com/sltrib/news/57118270-78/utah-marijuana-hemp-colorado.html.csp

I think (cross fingers) (knock on wood) that we may be able to come home today.  With basically no new information and no changes.  Whew, good thing we spent the last 6 days inpatient right before Christmas.  Here is the knowledge we are coming away with...#1) her ear infection was not gone and is now worse on the left #2) her eye bouncing and desats are not seizures which means they are probably obstructive sleep apnea which means we can go down on her seizure med to doses prior to last week when we raised it #3) Our new plan for both at home and in the hospital for the desats will be...when she drops her oxygen sats and her chest is not rising and falling we will remove the bipap, bag her with oxygen, once her sats come up we will try putting the bipap back on her.  In the hospital if this does not work they will then call a code blue and intubate her (but they will try putting bipap back on first).  #4)  I probably need to meet with neurology and pulmonology (Sleep Dr.) and possibly have another sleep study with the hopes that she would desat and they could adjust her bipap settings. #5) Neurology said they would only use emergency seizure meds if they are causing concerning vitals (low oxygen, heartrate)  which so far has been never for Ellie, she does not drop her sats with seizures (except the night-time desats which are apparently now not seizures).

I guess that is more information than I thought, so maybe it was not a fruitless stay after all.

It will be good to get home and START Christmas shopping.  (I am exagerating just a bit...I have a few small trinkets...but definitely have the majority left to do.).  It's a good thing I excel at procrastinating big projects, that is when I do my best work after all.