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!

Post Op #27 spinal fusion

It has been a rough 24 hours. The first few hours after surgery he had his pain pretty well under control.  The entire surgery lasted 8 hours from 7 past 3.  His team was extensive.  I saw a few of them rotating through the cafeteria as they were on break.

The good news is that he went from a near 90% curve to a 20% curve and balanced hips for his posture.  He has gained several inches in height and has more room for his lungs, ribs and digestion.

I love our team.  I have such confidence in them and they truly cared about Hayden and our family.

The incision looks great.  He is very swollen from his inflammatory response.  He was awake moaning and coughing all night.  He has been lying on his back and rotating with two nurses to his side.  He is on several strong pain medicines and muscle relaxers.  He will be on these a while.  They also cause him nausea. ICU is packed, loud and with constant interruptions.  Lots of little kids crying in pain.  We keep spa music on as a distraction and the suction matching to sound like rain.

Hayden had to have 2 blood transfusions as he has been loosing a notable amount of blood.  For the first time in his all of his surgeries, he has never required blood.  He went to into surgery a bit anemic at a 10.6 at 4pm and dropped to an 8.4 at 1 am. He required another transfusion of 300 ml at 6am and his hemoglobin went back up to 9.6.  He has lost 180ml of blood since then and dropped back to 8.6.  He has drainage tubes and his little body is fighting hard.  Fevers have been up and down as he fights.  He also required oxygen for the first time which he hatted. He has vomited and is fighting anesthesia/pain med nausea.

He has now been resting for a couple of hours at a time.  When he does wake up, the first thing he asks for is lets see what my messages are.  He loves them and especially the little videos and jokes.  Keep the texts coming trigghayden09@icloud.com.

I may not update everyday as I need to rest myself and have been up caring for Hayden.  Please know he appreciates the prayers and messages and especially the huge chocolate gift from Aunt Cate.  You have won the favorite aunt award by Hayden! He is so happy to share with all the people that come into his good fortune.  We will be in the ICU for a little while longer as we live moment to moment in recover.

Still the right decision with God blessing and watching over him.  The most profound statement that another friend in the hospital in Houston said yesterday was that the purpose of our children on this earth is to confound and humble the wise.

I feel humility in this process in every aspect from receiving service and depending on others when I have to rely on God’s will.

Spinal Fusion surgery #27

God surprises me and reminds me that we are never truly alone.  

We arrived at the OR at 5 am and he will be in surgery until possibly 3 with a large team. (we added an additional chief ortho surgeon to the crew this morning).  We also ran into another Spina Bifida family that we have known for years having the mitrofanoff procedure Hayden had years ago.  That was the single largest surgery he had ever endured with a 7-week recovery. Glad to know we will know our neighbors and have empathy in their journey.

This is Hayden’s talented surgeon that will add to his Dr. Bear 🐻  the same surgery that Hayden has.

New gowns at the hospital brought a smile.  Hayden lucked out with his favorite Spiderman!

Hayden was calm but insisted I get to go into the OR with him.  I got to see all the tools and saws but he calmly gave a thumbs up as he drifted off.

Every day is a gift.

The best gift Hayden could receive other than chocolate would be to see messages and videos directly to his iPad when he wakes up in a few days.

This pictures shows the endurance of neuromuscular scoliosis and the progress just over one year time.  My brave boy truly lives an inspiring life.  Lots of people may not like that message but he does.  Not because he uses a wheelchair but because he has purpose, dignity, kindness, hope, joy, happiness and positivity.  Don't waste your potential and health on trivial things.  What he endures is more than my worst of days. 

We are taking it day to day and should be here a week.  My wonderful mother arrived with her dog to cheer and care for my other enduring little warriors at home.

message Hayden at trigghayden09@icloud.com.

The bottom picture is if a new lift to help transport, lift and carry.  It is from a family that lost their son, Christopher, last year.  We actually have some of the same nurses now working for us.  Our families live the reality of fragile mortality and this touches my sober heart.