One Week Postoperative Spinal Fusion during COVID 19 Pandemic

As a Caregiver, I have been pushed to my limits physically and emotionally.  I have been made completely aware of my inadequacies to stop Hayden’s pain and trauma.

I do not write from the perspective of the patient enduring this trauma but hope that some day, Hayden will be able to personally journal his unique life experiences.

This blog has put me into contact with families throughout the world who have tragically not had access to healthcare.  While Hayden doesn't get to be cured of his diagnosis and endures these trials, my job is to help him find access to the best care available and work on ways to afford it.

“Justice” and “Fairness“ have always been core values of mine.  It is apparent when looking at Hayden, that his physical body does not allow him to utilize it in the same way use as the majority of people.  I seek for ways to compensate for any limitations and to find accommodations to allow him opportunities of his choice not determined by our societies limitations.  That he may choose to live life as close to the same standard as his siblings which equates to feelings of justice in this inequitable world.

My friend Tiffany recently said, “when working through an illness, it is YOUR battle.  You can feel isolated, judged and hopeless.”

The first 3 days in the ICU in the hospital were treacherous.  The care provided was outstanding, but being helpless while your baby screams and moans all night in pain was nerve-racking.  No amount of pain medicine could keep the discomfort away.

Hayden had to endure 3 blood transfusions.  His body fought hard. He lost a lot of blood.  ICU was very hard requiring every good thing that ICU offers (except no showers for caretakers).

Once bloodloss slowed down and oxygen and heart rate was not critical, we transferred out of ICU after a longer than expected stay.  On Wednesday evening, we had our first outing (to a different floor) and transfer to a chair.

Here he got to smile because he finally got out of his ICU room to the Ronald McDonald family room in the hospital, had Door Dash delivery from our wonderful friends, and got to enjoy some football.

Thursday was my first time in the chapel starting off the morning with prayer, meditation and yoga in the courtyard.  The sunrise hit the glass just right.  It was my first night getting several consecutive hours of sleep and I was grateful for the new day.

This prayer net gave me a good cleansing cry. It was beautiful.  So many precious children had been prayed over and loved it was extremely touching.

This is what enduring strength looks like.

This was the only activity he could participate in all week and he was sure looking forward to it.  He was busy with doctors and procedures and didn’t want to miss the only fun in the hospital.  He was thrilled when he was the first to win BINGO of all the patients in the hospital.  

To his surprise he also got to watch the replay of his friend, Cameron, kicking the field goal to win the Texas vs. Oklahoma game.

This picture tells the story of isolation during COVID at a children’s hospital.  Only one parent was allowed to be with the child, no visitors even including service animals and no charities giving out toys on carts to kids rooms.  Even the Ronald McDonald house wasn’t accepting families.  There is a multistory garage across the street that was just built to accommodate all of the excess visitors.

Saturday was the first day Scott was able to visit Hayden.  Friday night was the first night Hayden slept through the night.  He didn’t vomit and didn’t require pulmonary intervention.

The entire stay, Hayden asked for text messages and videos as he recovered.  When he would have moments of lucidity, he would ask that I check his iPad immediately.  I can’t remember who this was intended for, but his universal response was that he truly appreciated all the videos and jokes.

During times of crisis, kind and encouraging words, actions and prayers have been a lifeline.  Cutting out cancer isn’t just for physical illness but those that cause emotional illness as well. If your friends and family can’t be there to stand by your side throwing you life support instead of criticizing, condemning and being a part of the problem and not a solution, you know that their energy is not of our loving Creator.  Boundaries, self-respect and confidence grow as reliance on righteous judgment and intuition or inspiration speaks quietly and listening and acting becomes practice.

It is during this time that I cry out digging deep down to pull on my personal faith and spirituality seeking help in sustaining and strengthening me.

There have been many Superheros showing up in so many small and large ways.  Thank you.  You know who you are and where your heart has been.  Here a few pictures for you of some of our super heroes.

 This is my 7 year old Marvelous self-made Ironman

Hayden puked 15 times on this night nurses’watch and she requested to be assigned to us for a second night after that!?

 I didn’t even have to train this fast acting flash on any of the special ports, Mace or Mitrofanoff.  I could actually rest and work.  She worked tirelessly to make sure Hayden was comfortable after his terrible back spasm.  She is a mom and working during COVID and caring for the most vulnerable families while she has 2 littles at home.

This guy may be little but he is mighty in patience as a little brother who sacrifices so much of his mom’s attention for his older brother.

We anticipate coming home on Monday and many weeks for recovery.  It is a marathon of training and I may buy us all a medals and need some sort of finish line celebration.

Thank you!