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Our family

Thursday, June 7, 2012

More seizures...

We ended up being in the hospital for 4 days for the seizures.  Time has been running together since then.  Now, she continues to have more seizures, sometimes as many as 50 a day.  We started another new sz med, Onfi and it helped for a couple days and we had to increase it again after having to give her diastat (valium).  She is now on 6 seizure meds and that is ridiculous!.  If you follow me on facebook, I update there because it's easier and totally forget to update here.  That was memorial weekend and we wanted to avoid the hospital.  That only helped for a couple days and this past Sunday we went to the ER again.  That was a total waste of time and the only thing they did was draw some blood to check her phenobarb and trileptal levels.  We were there from 11:30am til 6:30 pm.  I did all her meds, feedings, neb treatments.  They never called Respiratory therapy to let them know they had a trach/vent child there.  they never even asked why we were there (they knew she was having seizures)  The main reason I took her was so we could give her some valium or something to break up the seizures.  But I guess since she wasn't in status it wasn't as important.  they called her neuro because he was on call and made it sound like the seizures were worse on the reduced gabitril (we started weaning that a couple weeks ago) so all he said was to start that back.  He wanted to see her this week but they were really busy with one dr in a car accident. Tuesday she slept all day long and was only awake for a couple hours.  Wed, she was awake and I didn't see any seizures that morning so we hoped that they sleep had broken the cycle.  But that afternoon they started back again, in a couple hours so had 12 of them. I called to give an update like Dr F asked.  The NP called back last night and said they had a cancellation for this morning at 10am.  I had to cancel my drs appt to take her.  It was a quick appt, he said to go ahead and stop the gabitril, he said they made it sound like things were worse because of the wean but it didn't make any difference.  I asked about changing the times of some of those meds since most of the seizures are in the afternoon so we are changing her trileptal from 9a and 9p to 1a and 1p.  he thinks that is the best med for the type of sz she is having right now.  I asked about the ketogenic diet and he said it's worth trying so he is having the nutritionist call me about it. He also pretty much confirmed the the inappropriate laughter is szs too..she has been doing a lot of that.
    Talked to dr M (medically complex) about possibly getting a port for blood draws, I had to take her 3 separate days and 3 tries each to finally get blood last week, her arms are all bruised from the bloodwork.  In the ER they could only squeeze the blood out of her thumb and she wiggled that and got blood everywhere, looked like an accident.
  For good news, we sold our old van to a wonderful family I met at dupont and the AC is fixed on the new one.  Our very first nurse that came to work for us 13 years ago, left the agency and came back but we could never work it out for her to come back...until now!  Pam started working for us on tues and thurs and we are so excited.
  Hannah also got her new sock monkey this week form Secret Ninja Monkey Operations on fb.  it has a trach, gtube and even a mitrofanoff (her cathing stoma).  help us think of a name for her monkey!