Poster Child

I haven't thought of Forrest as a "child" in a long time. However we have often thought of Forrest as emblematic of the many young people we have met with courage, resiliency and compassion beyond their years.  But we were recently told by a phycician that "Forrest is the Poster Child for everything that can go wrong in a hospital".  I don't believe he meant that Forrest was in any way jinxed, just that his case is so incredibly complicated and he has spent cumulatively almost 2 years in seven different hospitals. Things happen...

During Forrest's extended hospitalizations we've encountered wonderfully dedicated, talented, and caring medical professionals. We have seen medical miracles happen before our eyes. We have watched bleary-eyed and distraught as Forrest has been saved from almost certain doom on multiple occasions.

 But we have also felt the terror and helplessness of being captive in hostile and dangerous hospital environments where one moment of distraction or inattention can result in a human error with catastrophic consequences.  It's a flawed system because, no matter how sophisticated and excellent the hospital standards and procedures are, in the end it comes down to human oversight.  

A few of the errors we have encountered almost cost Forrest his life.   But God and his earthly angels have always somehow been there for Forrest at the exact moment he was in peril, and he has survived . And so it was that on Friday Forrest was exposed to a medication known to be life threatening to him. We caught it.  Doctors were notified, specialists called in, and a battery of daily tests have begun to determine if his body will react adversely, as he did in the past, to this medication.  Will this medication affect his surgical site or healing? Usually the dangerous effects become apparent by blood tests in the first few days, and so far his blood counts are stable.  Though my heart still races just thinking of it, we are all beginning to breathe again.  On rare occasions this exposure has been known to have a "delayed onset", so it will be several weeks before we know for sure and can put this risk behind us. 

We've debated whether to share this incident in the blog and frankly I've been too upset to write anything at all. In the end we decided to share it because mistakes are part of the reality of any prolonged recovery. Hospitals are wonderful places of miraculous healing.  But even the best hospital in the country is still a dangerous place to be.  I hope that reading about Forrest's journey helps someone else understand how critical it is for every hospitalized patient to have a vigilant advocate by their side. Even with the best doctors and nurses in the world, we can't abdicate responsibility for our own medical safety and care. It's not only okay, it's critically important to be informed, to question, to be involved. And when mistakes happen, and they will, it's essential to work collaboratively with the hospital, the doctors, nurses, and specialists to define the risks, minimize the damage, find the best solution, avoid the catastrophe and .....get out of the hospital as soon as possible!  And that remains our hope and plan. If Forrest's blood work is still stable Monday morning and the last drain can be removed we are Brightwood bound!!!

Grateful for every day,

Mum & Team Forrest

Forrest celebrates Tami's Birthday in the hospital 

The best plan, no matter what life throws at you, is to keep moving!  So Pops Forrest and Toliver take over the hallway for soccer practice!

Go 44!!!