Oh what a day

Brayden has been battling strep.  A fever that keeps coming and going.  What does that mean for a child who struggles with seizures?  It lowers the seizure threshold, meaning more likely to have more seizures.

Brayden started the day with a fever.  Then went into a seizure...a strange looking one where his arms and legs were contorted in a new and different way.  His arms and legs came out of the seizure but his face did not.  His face looked plastic, eyes glazed over.  Despite pinching his cheeks and moving him around, he was not responding.  We quickly gave him a diastat (emergency seizure med).  The diastat started to take effect quickly.  Meanwhile, Brayden was on the pulse ox monitor.  His breathing was in the 80s (should be high 90s/100) and his heartrate was about 160 (his is usually much lower than that).  We put him on oxygen and called the doctor.  The doctor told us to do a couple of things, one of which was to up the oxygen...that helped and in about one hour Brayden seemed to be doing fine.

This was all happening about 7:30-8:30 a.m. while trying to get out the door for Brayden's appointment at Children's in DC.  I contemplated cancelling the appointment because Brayden had a rough start to the morning but I figured and discussed with the doctor that if by the time we got to Children's and Brayden was not doing better then we would just head to the ER.  So we loaded the car with monitors, oxygen and feeding pump.

I arranged for Luke to be at a friend's house, then to school while we were in DC.  Luke was dropped off and we headed into the city.  About two hours later we arrived (much longer than it should be) a bit late...I called along the way to let the clinic know, they said it was fine.

When we arrived I realized why it was fine.  The wait to see the doctor was long.  We signed in and plopped down next to other families that had been waiting.  It was about 10:45, and one family's appointment was at 9:00 a.m., they still had not been called back.  We over heard others saying they had the same appointment time as us, the doctor was double booked!  They finally called back a few who were waiting.  We waited another 1 1/2 hrs, those families had not come out of the offices yet.  It was not looking good.  After about 2 hours of waiting, I spoke to the front desk people trying to find out where we were in the queue...we still had people in front of us.  Then I was told that once you are called back, you wait in another waiting room after getting vitals for another hour or so.  WHAT?!

I cancelled the appointment.  I do not care if this doctor is the creme de la creme and we waited for over two months for this appointment.  Waiting this long was not okay.  I rescheduled the appointment for the same doctor at a different location, told that it was not as crazy there.  I tried to complain explaining that taking a child out with multiple disabilities is hard, we have tons of doctor appointments and we cannot be a part of waiting like this...I think my feelings fell on deaf ears...I am still going to send in a complaint.

We left the clinic, headed to the cafeteria because it was 1:00 p.m. and I was famished.  Grabbed the food to go and headed home.

We were gone for a doctor appointment that we did not even have from 8:45 a.m. to 2:30 p.m.  Which left me tired and grouchy...and I still have to be a mom and wife the remainder of the day...Brayden however was in a great mood.

Oh yeah, it was an appointment to see the orthopedist about Brayden curved spine and tight legs.