Monday, February 4, 2013

Trace Update

Here's the update on everything from Trace's stay at CMHH and the past few days.  Sunday, Jan 27, Trace seemed a little run down, had a slight cough and chest congestion.  Seemed to be the same illness he had just recovered from in December.  He spiked a fever Sunday evening about 6:30.  Ran fever all through the night, despite ibuprofen.  Monday AM I called the pediatrician and set up an appointment for that afternoon thinking it could be handled like the last illness.  Trace seemed to be going downhill really fast by late morning.  By 10:01 AM I emailed the Mito Clinic nurse and asked what Dr. K thinks.  At 10:07 AM she responded with ER Now!!  The 6 minutes in between those 2 emails were one of the scariest moments of my life with Trace.  And I have to say I don't scare easily anymore.  I was already getting things together for the ER, as I figured they would send me there due to the fact I couldn't get the fever down and it seemed to keep creeping higher.  I stood Trace beside me to grab some things from the bathroom cabinet, when he collapsed and had a terrible tonic clonic seizure.  I was able to catch him before he hit the ground, his entire body convulsed the worse I've seen in years.  Once it stopped he was unable to hold up his head, stand or even open his eyes for more than 2 seconds.  This postictal state lasted almost 2 hours.  Not exactly a fun drive to CMHH. 

Only Trace can rock the mis-matched jams this well!

I arrived at the ER, which was ready for us as Dr. K let them know we were on our way.  I guess you could call that a "perk" of mito.  No waiting in the ER.  Next they drew labs, started IV fluids, and all the other normal stuff that happens to my little guy in the ER.  Keeping him from having to go through all that is the reason we try to keep him home despite how ugly things get.  His Daddy arrived at 4:00 - Trace and I were both very happy to see him.  Trace because Daddy brought the motherload of movies & candy and me because he brought food.  I hadn't had a bite until then, let's just say that cafeteria sandwich was the best ever :-)  We finally were moved up to a room about 5:00.  They had to reset Trace's IV - poor sweet baby.  This was the 4th time he was stuck of 7.  His poor hands are still so bruised.  Around 6:00 Trace spiked another fever and had another tonic clonic seizure where he was postical for a long period of time again. 

Smiling despite everything going on in his little body

The next 3 days were long and frustrating.  Trace's labs never grew anything pointing to a bacterial infection, however he was treated with antibiotics.  His fevers would come and go.  He developed a rash.  Wouldn't eat and drink properly.  Continued with seizures, but they got better over the course of our stay.  I was never so happy to hear we were going home. 

Practicing his basketball skills

My sweet angel

He did well at home until Monday.  He had several absense & atonic (drop attack) seizures Monday AM.  Trace has not experienced atonic seizures before this illness.  I really hope they don't continue.  He already has myoclonic, absence, and tonic clonic seizures.  We have been told that over the course of Trace's life he will develop different types of seizures and they could become worse.  I really hope and pray that the atonic seizures are just something from the illness and nothing that's going to hang around.  They are dangerous and Trace could really hurt himself. 

Thanks to everyone who prayed for Trace during the past couple of weeks!
Thanks to all the doctors, nurses and friends who cared for Trace!
Thanks to my brother for delivering the best dinner and games!
Thanks for all of your continued prayers for my Mister!

Peyton dancing with Trace on the patio Saturday night - Pure LOVE!!

Hope, Love, Courage &Faith,
Laurie