My Nightmare

I'm writing this post from the slowest wireless connection in the history of wireless connections in then pediatric intensive care unit at Cook Children's Hospital.

On Friday, my worst case scenario with Kendall and seizures happened. Only, it was worse because it happened while I was at work with a dead cell phone battery. I received a call from my dead cell phone (no idea how it even turned back on to ring) from Kendall's home health nurse. She sounded calm but I could tell it was something serious. In fact, the first words out of her mouth were "Jocalyn....this is an emergency."

The next thing I remember is her saying Kendall was unresponsive and she was waiting on the ambulance.

My drive home with a dead cell phone was the worst experience ever. I felt helpless and panicked and ran every terrible scenario in my head. When I arrived at my house the fire truck had pulled away and the ambulance was nowhere to be found. I'm not sure why, but I darted inside to an empty and still house.  It was there I broke down screaming, crying, and the rest is a blur.  I managed to finally have enough of a charge on my phone to have my blue tooth pick up  in my car, and I called 911 to see where I needed to be.  The dispatcher wasn't suppose to tell me over the phone where Kendall was in route to, but he did.  I drove to my dad's and he drove us to the hospital. He was just as panicked as I was, but handled the stressful drive under pressure with ease. (but make no mistake, I plan to take the stickers and magnets off my car because I don't want to be identified as that crazy person driving ever again!)

When we got to the hospital, after I just about screamed at everyone in the ER for not moving fast enough, I was able to set eyes on my baby.  It was a familiar scene.  Lots of people surrounding her still body.  The ER Dr. explaining to me that she may have had a seizure and was having trouble breathing.  She was going to need to a breathing tube to give her some help.  Her labs were coming back one right after another.  They did a chest x-ray and a CT. 

I was relieved to see my husband arrive in one piece.  All I had managed to get out to him while he was at work was Kendall was unresponsive and in an ambulance on the way to Cooks.  I'm sure his drive in Ft. Worth traffic was one of the longest drives of his life. 

I usually run worst case scenarios in my head.  This time it was no different.  The thoughts I was having about the outcome were pretty bad.  And at that point I didn't even know the whole story.

As we were still in the ER, I pieced together the story.  It became completely evident how lucky we were that Kendall was starting to respond, and breathing on oxygen without a tube.  (apparently a bold move on the ER Dr.'s part....but one I'm glad she made) 

At home with our nurse, Kendall had stopped breathing and had no pulse.  Our nurse checked her blood sugar, gave her rescue breaths and compressions, and moved at record speed to save her life.  I can't say I would have responded that quickly or appropriately if there on my own.  So, thank the Lord for our angel Angelika! 

The Pastor from my parent's church was there and prayed over her during some very stressful minutes.  He asked what specifically we were hoping for, and my first thing to say was no further brain damage and the seizures to stop.  The chaplain in the ER prayed with us too.  The nurses and Dr.'s and techs were calm and swift in all their actions. 

We were sent to the ICU...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sunday morning....



After three stressful days and two sleepless nights in the ICU, we *Justin* were able to convince the hospital we could be discharged from the ICU to home instead of any additional time on the floor.  Probably not a very common practice, but in Kendall's case, her endocrine issues that had developed because of the stress of it all we were equipped to handle at home.  The 24 hour VEEG did not show any seizure activity and from a neurology standpoint, we were in the clear.  Also, her CT scan did not show any new damage.  Thank God.

So we are home.  Slept in our own bed last night and got some serious rest.  I still have a lot swirling around in my head about why this happened.  There are three possible thoughts....Mitochondrial Disease (since her CO2 levels were off the charts...but that can happen with seizures too)  some sort of sleep apnea, and depending on which Neurologist you talk to, it was just an isolated incident.

Either way, we are working on a new game plan.  It may or may not involve a sleep apnea monitor at home, oxygen, or new meds.  Currently, we are just adding L-Carnatine (one of the Mito cocktails) and using Klonnopin in times when she may be sick and more susceptible to seizures. 

We will survive this.  PTSD is just now setting in on me!  But, surprisingly we feel OK about it all, and very, very, very lucky.

Thanks for your continued prayers!

Back to Work

I can't believe I haven't updated my blog in so long.  It has been almost a month...and what a month it's been!

I started back to work last week.  It has been a journey.  People ask me if it's hard to leave Kendall during the day, and the answer to that is no.  There were no tears shed on my side going back to work.  We have such a great system with her therapists, and beloved nurse, Angie, that Kendall hasn't missed a beat in her routine.  In fact, honestly I can say that when I come home I'm a better mom.  I've always said I was a better mom when I'm working, and I believe that still holds true.  I'm better with time management, prioritizing, and organization.  I am a people person.  I enjoy being out in the world.  Taking a shower in the morning, and actually putting make-up on has made me feel human again.  Staying at home was extremely hard for me...even with help.  There's always something to do...closets that need to be cleaned out, baseboards that have accumulated dog hair, loads and loads and LOADS of laundry.  And don't get me started on how Pinterest has stressed me out and made me feel completely inadequate!  Long story short, going back to work has been an answer to prayer.

Now, without going into detail about what I'm doing...I will say I have had a bit of an emotional journey with it all.  I have a burning desire to advocate for families that are in situations similar to what we found ourselves in during the dark days of diagnosis with Kendall.  For me, it's more of a calling than a job.  But during the past few weeks in the standard trainings and modules on company policies, I've found myself extremely frustrated with the system...and the training on patient rights and stories about abuse to children and people with disabilities just about set me over the edge!  There were many, many tears shed that day.  But I think I am getting tougher, and I am certainly learning a TON!

My dear husband has been out of town on vacation for a week...it was just bad timing...but he comes home tomorrow, so I'm hoping I will gain some sanity again this weekend. 

The kids are enjoying summer with Kamden in a lot of camps, and Kendall doing Yoga in the living room!  It was reported to me today she sat unassisted (but with our nurse right next to her on the floor) petting the dog for 45 minutes!  That girl has come so far!!!  And our OT is working with kineseo tape on her mouth and I watched a video of her wrapping her lips around a straw and sucking.  Very exciting!

My parents, as always, have really stepped up to the plate to help me this week!  My mom has made dinner the past four nights, and my dad is here every morning until our nurse arrives and helps out during the day with Kamden.  In the afternoon my mom swims with Kendall and reads to her.  Truly, it takes a village!  But we are sooooo blessed and thankful to have the one we have :)

I'm happy.  My kids are happy.  Life is good.

(and I'll end on that note and save the details about my endeavor to change some of our school district's "policies" for a later post.....never a dull moment!)