Huge Overreaction to Seizures

Last night some friends volunteered to come sit with Annie at the hospital so the rest of the family could all go out to dinner.  It was such a kind offer, and we decided to take this opportunity to have a birthday dinner for me.  Annie had a great day yesterday since she was on the zofran, so we really had no worries about leaving her for an hour.

We went just a couple blocks away from the hospital to Olive Garden--my favorite! :)  Shortly after our salads were served, the hospital called to say that Annie was having seizures and had been going for 10 minutes, so they gave her 2mg of Ativan.  Justin told them that the myoclonic seizures she was having were completely normal and they didn't have to give her Ativan for them--that those kinds of seizures weren't distressing and they would eventually end on their own.

However, half an hour later, we got another call saying that the seizures were still going so they gave her another 2mg of Ativan!!  That is WAY too much Ativan for her! They said that she was finally calming down, but was becoming so sedate now that Annie's airway was obstructing and collapsing.  Well, what did they expect after giving her so much Ativan!  They told us they would have to put a nasal trumpet in to protect her airway, and Justin told them to just put her CPAP on her instead.  However, since her CPAP is from home and not hospital-issued, they weren't allowed to put her CPAP on her!!  Absolutely crazy!

By this time, we were so frustrated and upset by the hospital staff, that Justin decided to leave dinner early to go back to the hospital to get Annie's CPAP on her so they wouldn't put in the nasal trumpet.  This was all so ridiculous!  If they hadn't given her the Ativan, she wouldn't have started having the breathing problems they were then dealing with, and her seizures would have eventually stopped on their own and she'd been just fine.  Also, since Ativan suppresses respiration and heart rates, we were very concerned that her bradycardia would return and her heart rate would drop to dangerous levels again.

A respiratory therapist--who refused to put Annie's CPAP on her--was holding Annie's head and jaw to open up Annie's airway.  And then when the resident got there--just a few minutes before Justin--the resident decided just to put her CPAP on her.  Finally someone who made a good decision for Annie!

The thing that is so appalling is how quickly they overreacted to Annie's harmless seizures, but a few nights ago when she was actually in crisis with a heart rate in the 30s and unconscious and unresponsive, nobody seemed to care or worry about it at all!!  I hate to be critical and negative, but last night I was about ready to throw the towel in on this hospital!  I've never been disappointed by the care Annie has received here, but this current stay has made me realize just how important it is to be on top of Annie's care here, and carefully oversee things like her IVs, drugs, and feedings and be an advocate for her.

I thought we'd had enough excitement with them getting her electrolytes dangerously out of balance a few days ago and the bradycardia that resulted, and I thought with all that stabilized now, things would quiet down around here, but last night proved me wrong.  I still can't get over how many doctors and nurses rushed into Annie's room for some harmless seizures, but that no one was concerned about such a slow heart rate that could have put her into cardiac arrest a few nights ago!  Shocking and appalling to say the least.  I can't wait to get Annie back home!

Now, by way of update, Annie was zonked the rest of the night and all of this morning.  This afternoon she has started to perk back up a little.  She just transitioned from half-strength formula to full-strength at a slow rate, still with the zofran coming regularly.  Ironically, her heart rates are unusually high now for some reason--135-145.  But she's finally alert again and enjoying cartoons in her chair.