02 February 2015

Sitting with friends during their son's surgery

A few weeks ago, the day before Bennett's surgery, I made a special trip to Dallas to be with our long-time friends, Tim and Cynthia.  Our friends, whom we knew from our 3 years in North Carolina, they had researched the best doctor in the nation for treating the sagittal craniosynostosis repair of a full Cranial Vault Remodel and decided traveling across the country from Raleigh to Dallas for Dr. Fearon and the Medical City Children's Hospital staff was the best decision for their 3 year old son, Evan.

I was fortunate to arrive in just enough time to get to see Evan myself as he was in the final stages of preparation for his surgery.  It was a new experience for me to be the patient advocate and play the support role in this surgery preparation, rather than to be the caregiver and mom of the patient.  I knew this was an intimate moment - having to give up your child to the clinicians for surgery.  I felt nervous and awkward.  Was I being helpful?  Was I in the way?

But, Cynthia and Tim reassured me that my presence was very helpful and very welcomed.  I pulled out my camera to capture the moments when Cynthia and Tim said good night to their son...

...and placed him on the hospital bed to be wheeled him back to surgery.

After saying goodbye, Tim and Cynthia and I went downstairs to the cafeteria to eat.  The surgery was going to take a few hours so we knew we had time to catch up on what was going on in our lives, since we hadn't seen each other in a few years.

About 15 minutes in to our eating turkey sandwiches, we watched as Evan's surgeon casually walked by the cafeteria.  The three of us laughed at the strangeness of knowing Evan was upstairs in the operating room but that the surgeon was still just walking around downstairs.  We reminded ourselves that, even though medical procedures are momentous occasions for families, it's often "another day in the office" for surgeons.

After we were done eating, we went to the Family Resource Room downstairs at Medical City Children's (btw, this is a different children's hospital than Bennett goes to for his CF care).  This Family Resource Room was amazing.  We sat in comfy chairs in a dark corner lit by a lamp with a soothing water fountain nearby.

Cynthia snuggled under a blanket.  Tim drank his coffee.  I typed on my computer to place updates on their blog.  The three of us chatted quietly, even laughing, all a way to release the tension as the moments ticked by.  Waiting for your child to come out of surgery can often feel like time is crawling.

We were able to get updates as often as we wanted by calling in to the OR.  The nurses updated us on his prep, his surgery and the closure of his surgery.  We enjoyed knowing things were going well with Evan, that he was sleeping comfortably and a warm blanket.  We also enjoyed the time in between these calls to the OR when we temporarily forgot about the surgery and were engaged in conversation.

After a few hours, it was time to meet Evan in recovery on the PICU floor.  About the time Evan was coming out of surgery, I had to leave and return back to Waco.  It was my turn to go home and pack and prepare for Bennett's surgery scheduled for first thing the next day.  But I did have a chance to glance at Evan as was being wheeled in to the PICU.

He looked great well for a child who had just had parts of his skull removed and replaced.  But, as we were all to see, the swelling had simply not taken place in yet.

Over the course of 24 hours, the swelling would be so severe that Evan's eyes became swollen shut.  Poor little guy didn't even look like himself for a few days.

I found it hard to be at the hospital with my little guy when I wanted to be at the hospital to support Cynthia and her little guy.  But, we used texting to keep and touch and encourage each other.

Evan is now at home in North Carolina and doing better.  Unfortunately Evan's recovery has been a lot harder than Bennett's.  It will take a month before all of the swelling goes down.  And, it may take longer for Evan to adjust to all the changes that came about from the surgery.  But, we are all relieved the surgery is over and went as well as expected!

Before I left the hospital, we took some pictures to document our time together (Brian wishes he could have been there with us too).  

Thank you, Tim and Cynthia, for allowing me to come be with you during your Evan's surgery.  As one who has regularly been the beneficiary of other's love and support in our journey with CF, it feels good to be able to share that love and support with you.  To follow Evan's story, go here.

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