The Worst of Times

Disclaimer:  I have promised my friends that I would warn you at the beginning if tears are likely....So, be ready for tears!!  And, don't say you weren't warned.

William Howard....William Howard!!  (as Carson would say!)
You have taken years off of my life this weekend.  We have been living the craziest 48 hours of our lives since 5:50 on Saturday evening.

Early this past week!!!  Resting so comfortably!!

 

One of my fave pics....also, early this past week!!

I will give you all a little rundown what has transpired for our dear sweet baby boy!  We received a phone call from Monica, Will's nurse, on Saturday evening that he was going for an emergent CT scan of the head after he had an episode of unresponsiveness.   The doctors wanted to make sure his brain function was normal.  So, we rushed to Children's Mercy.  If you saw an Expedition racing on I-70 on Saturday, it was us flying down the highway with flashers on the whole time!  We made it back to his bedside in no time.  They tried to get the CT but were not able to do so.  Will was moving too much--a good sign if you ask me! 

But, the period of unresponsiveness was just the beginning.  Later that night, he was working so hard to breathe and breathing so fast that I was SCARED.  I am an ER nurse at heart--it has always been my love, not that I don't love what I do, but I love the adrenaline rush!  I was holding William as he was breathing 150 times per minute and his heart was racing over 200 beats per minute.  His face showed pure panic.  I have never seen such retraction in a child, and it was MY baby!  The ICU doc immediately came into Will's room and decided to intubate him for rest.  I have never thought that I would beg for my boy to be on a ventilator.  But, it was definitely needed.  So, Chris and I stood by while he was intubated and placed back on the ventilator.  I pray to God that no one else ever experiences this level of helplessness.  He was then sedated and paralyzed to get the rest that he so badly needed. 

And, he has had a few ups and downs since.  Poor IV access, FEVERS, worsening chest x-rays, not tolerating breathing treatments, etc.  Right now, William is on the ventilator with multiple meds dripping to keep his heart function up, keep him paralyzed and sedated, antibiotics for his fevers, TPN for nutrition.  They were able to complete the CT scan yesterday morning, but it shows a small abnormality in the right frontal lobe.  We have no idea what it means or when the abnormality occurred.  It likely happened WAY before Saturday but when no one knows.  He has an MRI scheduled for tomorrow morning.  They were supposed to do it this morning, but William could not maintain his oxygen levels and had limited IV access.  So, they placed another central line and increased his vent settings--much better this afternoon and evening.  MRI is scheduled tomorrow morning.  But, in actuality, the brain function seemed completely appropriate before and after his episode of unresponsiveness.  And, really it all makes no difference to us---would we even know if we hadn't done the CT???

Watching this all happen has been eye opening for sure.  We thought the worst days were those surrounding heart surgery, but this downward fall this weekend has been the WORST days of William's young life.  He truly is clinging to life while waiting for his next open heart surgery.  And, we have to sit idle and wait.  His cardiac surgeon is on vacation until Wednesday morning.  We are anxiously awaiting Dr. O'Brien's return.  William is thinking, "You all told me to make it 8 weeks and you would get me fixed.  8 weeks is up.  And, now, we are on week number 9.  Get me fixed, already!!!"

Daddy whispering to his boy!!

Mommy's touch makes it all better, right???

And, if not Mommy's touch, Daddy's kiss is surely the best medicine!!!

Chris and I are so blessed to have the support that we have in our parents, siblings, cousins, and friends.  We really couldn't do this without their love and support.  Thanks so much for being there for us.