Home, again {for now}

Audra fighting the effects of doubling her Depakote dose on Tuesday

 

Where oh where is my sweet smiley girl?

Audra was discharged from the hospital on Thursday at 11:00 am and we headed right over to her 11:30 neurology appointment.  Her neurologist was surprised to see us in clinic...she said she was planning on coming to see Audra at the hospital that day.  And well...she was less than happy that Audra was discharged without a solid plan for medication adjustments and follow up.  Audra is on many new meds now and some of her old meds have had dosage changes by new doctors.  So it's beginning to get difficult to understand who's in charge of what and who to call for what.

Neurology appointment summary:

• The bloodwork that was sent to the Mayo Clinic to evaluate for autoimmune encephalitis came back with one elevated antibody titer.  It isn't super high, but still 7x the normal value.  Seems like they aren't sure what to make of this yet, but it probably requires some further investigation.  And the possibility of a spinal tap to test her CSF was mentioned again
• We will increase her evening dose of Depakote this coming Saturday.  So far the Depakote hasn't seemed to have an effect on her behavior, and she definitely seems to be having more trouble staying asleep overnight the past few days.  We continue to hope and pray that Depakote is the answer to helping Audra
• Audra will be re-admitted to CHOP in June (hopefully the week of the 5th when her neurologist is on service) to have another video EEG to see if the Depakote has "calmed down" her abnormal EEG.  Depending on the results they will consider adding Valium to her ever-growing list of medications

Once we finally got home Thursday afternoon a new home care nurse came over for us to meet/interview.  She ended up staying for the whole 8 hour shift (4pm-midnight) and she said she'd be back Monday.  God bless her for taking on Audra!  {I promise I'll post about the whole home care nursing process soon!}

Friday was Maura's Race for Education at school. 

 

Riley and Audra were off school because they had dentist appointments

so they went with me to cheer her on.

 

 

And Audra even walked a few laps with Maura

 



Our feisty little Audra has been quite the Houdini lately while in the car.  We can't get her to keep any kind of seatbelt on, no matter how much we extra fasten it and hide the release button.  She manages to wiggle her way out of the straps no matter what!  And with her no fear attitude recently she tries to open doors and windows or crawl in the front seat while we are driving.  Sooo...

I found a 5 point harness car seat that accommodates up to 50lbs so hopefully she can use it for a while.  Thankfully we had an uneventful ride into the city for their dentist appointments, now that Audra was securely strapped in :)

 

Riley is never happy about being at the dentist,

but at least now he tolerates it,

which says a lot about how much he has matured and learned to cope

since the early days of me holding him down for just a quick peek by the dentist.

 

Audra's dentist said it was time for another trip to Day Surgery to fix up her teeth.

So, within 24 hours of being discharged from CHOP she already has two invitations to return...

an admission for a video EEG and a trip to Day Surgery. 

 

And as if that wasn't enough medial excitement for Audra in just 24 hours, she ended up needing a trip to urgent care also...she still has drainage coming from her left ear.  She finished up her antibiotics earlier this week for the ear infection/ruptured ear drum we found 2 weeks ago.  One quick look and the doctor said her ear was still full of pus!  So time for a stronger antibiotic and ear drops. 

The rest of our weekend was packed with lots of activities and sports:

Maura's dance performance group participated in a competition

 

She was in two dances and only had about 20 minutes in between the two.

She had to change her costume quickly AND switch her hair into a French braid,

which I have no idea how to do!

 

Big dancers to the rescue...

They had some of the older girls lined up ready to do the little one's hair as soon as they had their costume changed.  Phew!

 

Before the awards ceremony started they had all the girls up on stage with huge glow sticks dancing to music with one of the judges

Riley's main event of the weekend was his last track meet of the season. 

He's not a big fan of running, but I think he's good at it, and it's good exercise for him.

He only exercises his fingers all week long playing video games so I make him exercise his body on weekends by participating in Special Olympics swimming, track, soccer, etc. 

Forget the gold medals...

hanging with these characters might have been the highlight of his day!

We also squeezed in a few soccer games, an ice hockey game and a quick rode trip to Long Island for a couple roller hockey games.  You would think we had 40 hours days this weekend with all that we managed to do!

Tomorrow is back to school again for Audra, hopefully she manages a bit better.  There are only 3 weeks until the end of the school year!