Uncensored, open and honest. I have begun to type this post many times. I am concerned about the tone that it will cary and portray into the future. I would like it to read as unyielding optimism. For now, I have decided to be in this moment and explain the uncensored, complicated version of where we are.
It has been one week since we came home from the hospital. Hayden has had a few good days in a row. I feel that while making that claim, I am walking on egg shells. We have had many starts and restarts to a frustrating recovery. We continue to pray and hang onto hope and draw nearer to our Faith. The heart-aching part is trying to find peace knowing that there is no "cure" to Spina Bifida. This is a journey that is teaching us all along the way each and every day. We believe God has a plan for Hayden's life and a divine purpose.
As educated as I have tried to be on complex medical matters, I can never learn enough. The tests and surgeries have produced little answers, but Hayden's charm and determination is beginning to resurface which feels like the beginnings of recovery. For those of my family and friends who are not religious, I have tried to address everything in an analytical manner and researched, read, called and spoke with every professional and publication within my reach. For my friends and family of faith, it is my faith that leads me in the direction that I should go James 2:14-26. It is during the quite times that I feel inspiration on where to go next.
Getting released from the hospital was a complete struggle. It took us a full day to go home. We began bright and early cleaning the Ronald McDonald house where we stayed only to spend the rest of the day waiting for the all clear to go. After Scott had made it to the airport to pick up my sister Julia, Garrett had developed a fever of 102. I had to leave the hospital to take him to the pediatrician. He was diagnosed with a respiratory virus and I had to keep him clear of Hayden when we got home late in the evening.
The first three days that we got home are a bit of a blur with little sleep due to a sick baby and recovering toddler. Here is what the button looks like without invading Hayden's privacy.
Thanks to good friends, the help of a nurse (Dana), and the assistance of two sisters (Melyssa & Julia), we managed through the week and even went on a date. Similar to the poems Footprints in the Sand, when I was suffering from anguish, sorrow, and defeat there were many footprints in the sand carrying our family and making our burden lighter.
|This is what we got to come home to after an exhausting stay at the hospital. Thanks to the Davies family!|
Having 8 people in our apartment might be a housing or fire code violation of some sort, but we did it. Hayden has made it one week at home and even made it out of the apartment two times. His energy is slowly returning and he is looking more like himself. This was his first outing going to the opening weekend movie premier of "Planes".
The tough news:
Last Wednesday we had a follow up with the neurosurgeon to go over the test results. The results of the tests (MRI, Somatosensory Evoked Response & Brainstem Auditory) produced no notable findings. This is good and bad. The MRI did not show any more fluid in his syrinx and did not show blockage in his Chairi brain malformation. That just means that the fluid in the brain and the spine is not pinched.
As we spoke with the surgeon, he said his gut led him to believe that the spinal cord that he had operated on Hayden at birth (myelomeningocele )was tethered and was creating nerve damage that was creating the many unexplained and escalating symptoms that Hayden has been having such as, eating, swallowing, increased scoliosis, decreased mobility, writhing, slowed growth, and loss of balance to name a few. I had unfortunately been anticipating this for some time. I may have been in shock as I was emotionless at this news. Not even one week post G-tube surgery and now we are being told Hayden will have to undergo spinal surgery as soon as possible.
Hayden also has scoliosis. It is unclear at this time if he will have to have rods put in his back to straighten his scoliosis or if by untethering his spinal cord from the scar tissue if it will straighten out on its own. I have not felt worry about this yet as we work hard at getting him healthy from this surgery first. tethered cord research with scoliosis
We have been strengthened by positive thoughts, messages, visits, good deeds, meals and all the prayers that keep us going each day.