Wednesday, April 6, 2016

Wyatt's Brain Surgery 2016

As I sit in a quiet hospital room while Wyatt sleeps, I wonder how differently things are now from 8 years ago.  Because of the many roommates we have had 8 years ago from the NICU, PICU, and 6th floor and by having my blog, we made so many connections world wide and at Johns Hopkins.  It was a much needed and wonderful support network.  Things are different now- definitely more comfortable and luxurious but it was those connections that kept us going.  Now updates are made on Facebook, limiting just your friends to see and having a private room with its own bathroom, while very nice, also is very isolating.  I kinda like the culture and environment 8 years ago better.  Being in a much more stable place now, I certainly don't mind being in the new JHH!  Wyatt is living up to his name of being a warrior.  After a tough, long, five hour surgery to place a stent in the ventricles and to clear out the scar tissue, he is doing remarkably well.  The last two days were painful but today Wyatt is working hard to try his best to be active.  We are very thankful to the wonderful doctors and nurses here.  It was neat to travel down memory lane having the doctor on call in the PICU on Monday night also was the doctor who put him on ECMO at two days old.  It was neat to bump into Wyatt's NICU neighbor during his first month of life and it was nice that nurses stopped by to visit sharing that they took care of him as a baby and he made such an impression.  Wyatt's brain surgery and our daily routine is a reminder that kids live with CDH daily.  My little guy and his sister Chloe are such blessings. 

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