RED-Y to Recover at Home!

This was one of those weeks where time was elusive as it simultaneously crept along and caught us up in a whirled.  

The Timeline

Monday morning, May 6th, I awakened early and read a devotional entitled, “Do the Next Thing.”  It perfectly resonated with my paradoxical emotions.  I dreaded the 7th, I wanted to hurry up and get to the 7th, most of all, I desperately wanted to be on the other side of the 7th with my son in my arms. 

May 7th was so intense. In God’s mercy, Nathan was as cool as a cucumber, and the four of us had a small posse with us in the waiting room along with a swarm of texts, pictures, etc. of friends in red, bible verses, prayers and well wishes.  To say we were being upheld is an understatement.    The surgery was supposed to be about 5.5 hours, and we got the typical text updates the first few hours.  When Jonny’s phone rang with a call from the O.R. after just over 3 hours, the conversations around me faded to the margins as my heart slowed and my attention strained to read his body language…  And then… “They are closing him up.  We should head to ICU in the next 30 minutes to meet the doctor and then see him.”  Surgery went about 1.5 hours faster than expected!  

Tuesday night was spent in the ICU with all it’s glory of tubes, cords, etc.  BUT, NO VENT.  This was one of my biggest dreads going into this surgery.  The weeks and weeks he spent on the ventilator as an infant were so harrowing and my mind revolted against having to see him like that again.  Due to an aggressive surgical approach, we were all spared the trauma of the vent this time around.  Again, God’s mercy.

This picture captures one of the most vulnerable and tender moments I have ever witnessed.
As Nathan began to come off of the anesthesia, his hands instantly went towards the RED device to try pull it off.  With eye swollen shut and lines in both hands, when he felt Jonny’s hands holding his, trying to keep them away from the device,
 he pulled Jonny down into himself and held onto him for about 10 minutes.  
No words.  Just holding on so tightly.

Wednesday his swelling continued, but he narrowly escaped a blood transfusion and enough tubes and lines were taken out that he was able to be exited from the ICU and sent to a general floor.  Maddie and Bryce were also able to see Nathan that day during his best few hours!  Mercy.

Thursday morning about 6am he kept asking, “Can we wake up and start the day?”  Not much later, he asked if he could walk, then he wanted to take a bath, then he wanted to walk and bathe again… Basically, he wanted to do anything other than be in the hospital bed!  He still had a temporary feeding (NG) tube in but we were able to push his volume significantly and he would take small sips of water by mouth.  

I call this picture "Resilience."  
3 days into the RED device Nay wheeled his own medical pole down to the play room, and used his sweet little no-knuckled fingers to tinker with some Legos.

Nathan was declared “a fast healer” by his surgeon and Thursday evening he was discharged.  My parents live about 10 minutes from his hospital in Dallas and we stayed there for about 24 hours.   Friday, about 5pm we were able to come home.

Recovery at home is more beautiful and every bit as hard as we expected.  

The Hard 

Nathan is a champ.  But this device is no joke.  At this point, it dramatically limits eating and sleeping while also impacting how he can hold his head comfortably, how we hug him, what he can do…. He has baseline pain that still spikes between medicine cycles.  The not eating has been particularly hard for him.  He has said things like, “I wish I could just take this off, eat, then put it back on.”  

We’ve noticed he avoids mirrors as much as he possibly can.  His intuitive big sister realized that while the rest of us keep replaying one video of him in the hospital that we find particularly humorous, he keeps going back to look at pictures from Monday and early Tuesday morning - the last ones of himself before the RED device was on.  

He is in a hard place of wanting to be with people, but also not being ready to be with people.

He’s not comfortable with himself yet.  

We are comfortable with giving him the time and space he needs to process, accept and proceed.  *The pictures in this post are ones he has approved for us to share publicly.

The Beautiful

The outpouring of love, prayers and support we have experienced this week has been nothing short of breathtaking.  We are humbled and overwhelmed by the attentiveness, encouragement, support and touches of connection from so many people towards all five of us collectively and individually.  Jonny and I have said over and over again that we have felt the prayers of an army around us.  The two songs linked below express our hearts and experience...

         Over and Over - Meredith Andrews                                       Rescue - Lauren Daigle

The sibling relationships have been special to witness.  Madison and Bryce have been incredible.  It was a crazy week for them, and they each have unique personalities and needs of their own right now.  We have seen all three kids “consider one another as more important that yourself” at different times as we are all navigating a new, temporary normal.

Finally, some of you know that last month, Nathan went on what we called “The Trip of a Lifetime” when he and Jonny were given the opportunity to go to Disney World through an organization called Shields for Kids, based out of San Antonio.  The real highlight for Nathan was that his real life hero was with the group as well.  Rafael is a 24 year old who has Apert Syndrome. We came across a video of him as an equipment manager for his college’s football team a few years ago, and Nathan immediately declared, “I want to be like Rafael!”  Jonny and Nathan were able to spend close to a week with Rafael and his family at Disney and it is impossible to articulate how deeply meaningful and joyful that time was for them!  

Rafael and his parents FaceTimed with us the night before surgery and then they came to the hospital on Thursday (from S.A.) to see Nay.  Rafael was so appropriately articulate and honest with Nathan about how difficult having Apert Syndrome can be, but he also encouraged him to remember that he has a family and friends who love him.  He gave Nay a sign for his room that says, "Mindset is Everything."  I cannot think of a more beautiful way for Nathan to be escorted out of the hospital to begin this season of his journey. 

Please continue to pray for Nay's physical comfort to increase through sleep, food and meds.  Please pray for creativity, patience, endurance and overwhelming compassion for Jonny and I as we seek to attend to Nathan's physical and emotional needs as well as continuing to see and be with Maddie and Bryce.