Sunday, November 10, 2013

Hospital update- new seizures/new medication


So we're back in the hospital.  It all started Friday evening when I got a call back from the neurologists office after discussing things that had been concerning us with the wonderful nurse that I've been in constant contact with.  The neurologist felt that the seizures Riley was having were enough of a concern that we needed to head to the ER.

We waited a bit for traffic to die down and for Grammie to get to our house (fighting the same traffic) and then we were on our way.  The nicest part of the evening was that the nurse from the neurologists office had already made the ER aware that we were coming and the nurses and resident had already reviewed Riley's case.... So they were no lengthy waits and no scrutinizing questions.  You know this made us both very happy!

We didn't know at first if they'd keep us or just do a med adjustment and send us home.  It was finally decided that they'd admit us and most likely start the continuous monitoring (we were scheduled to do this for 24-48 hours this week anyway).  Dave and Riley had a pretty uneventful night on Friday and we really were just waiting for labs and doctors.  Made us both wonder if we could've just headed to the hospital in the morning....

Saturday morning they gave the go ahead for the monitoring and we knew we were settling in for another long stay.  We didn't know what was coming though.

What we know now.  The ACTH is working.  Riley isn't having IS (infantile spasms).  We're celebrating this fact.  The next medication they would have tried if the ACTH wasn't working may have had an affect on the limited vision Riley does have.  So for this we're extremely thankful.

Last night around 1am the nurse woke me up to let me know they were giving Riley Ativan  (a pretty high dose).  Riley had 10+ seizures in a row. While sleeping.  I believe the nurse called them tonic/clonic seizures.  I was half asleep when this all happened.  My heart sank when she told me and then the worry set in.  There isn't much to do as a mom at 1am except worry.

So I spent the rest of the night googling and worrying and praying.  I haven't been this scared for Riley in quite awhile.  I mean I worry daily about her future but, sleep at night knowing she's stable. 

Early this morning  Grandpa Hopper met me at CHOC so I could run home and shower and get the boys ready to head to Molly's birthday party.  I was already really bummed that Riley would be missing the party and it was important that I was there with the boys.  We rushed to get ready and get Dave back to the hospital in time for rounds.  We're thankful Dave made it because there was a lot to be told.

They have started Riley on Depakote.  It will help with the specific type of seizures Riley is having. They gave her the first dose through her IV in order to front load her today and have been giving her doses as needed all afternoon all while measuring her levels as the day progressed.  She's also still on the continuous monitoring so they can track exactly how the med is working.  The seizures Riley had today were much more severe and involved. I know now we headed back to the hospital at the right time.  I'm also thankful her second such seizure of the day didn't take place while the boys were with me visiting.  Logan is already SO worried.

For now we wait.  We hope this works and we hunker down again in the hospital.  We knew seizures were inevitable, we knew hospital stays would happen but, we're all pretty exhausted emotionally and physically from everything that has happened in the last few weeks and... We miss Riley.

I know Riley is sick of being inpatient and we're just hoping they get these seizures under control and at a manageable level soon.

I'll leave you with some pics of today.  Tomorrow our niece Molly turns 3!  It's hard to believe.  Happy Birthday Molly Elizabeth!!! We love you. xoxoxo

I'll update more tomorrow.  I'm doing this post from the IPad for the first time as I left my laptop at the hospital and it's not as easy for me to navigate the blogger APP!

Dave,Megan,Logan,Mason and Courageous Riley

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