This weekend marks four months since Stephanie did not wake up and had emergency surgery to fix a brain bleed caused by an unknown head injury that had clotted and burst. It has also been six months since I spent a weekend in the hospital newly diagnosed as a Type 1 Diabetic.
I am up by 30 lbs of muscle weight over the severe weight loss that the Diabetes onset caused and running and exercising to keep my insulin use extremely low. While the first 30 days were very difficult – my attitude combined with the support of family, friends, and the great USF Diabetes support team made things very easy by the New Year. Lately I often have to remind myself that I have the disease and for that I am blessed. I see the struggles that others with the disease face and consider myself lucky.
That said I see my Type 1 as a gift. Being relatively healthy my entire life and not being in personal need of the medical community I got a crash course. The weakness of losing 20 lbs in 3-4 weeks, the sore throat and mysterious dry mouth, and severe fatigue and loss of concentration measurably consumed about six weeks of my life. I fought hard to complete the Richard’s Run 5K which was my last exercise until after the hospitalization.
After the diagnosis I learned what it is like to live with a chronic illness, to feel like my body had become broken and betrayed me, to have doubts that I would ever be physically and mentally strong again. I was determined to build myself back and did. I counted every pound gained and tracked every mile ran and gained it all back and then some. I ride and run more than ever now and plan to add more activities given the time.
My Type 1 helped prepare me for what was to come.
Stephanie’s Traumatic Brain Injury (TBI)
Every day since we thought we lost Stephanie has been a miracle. The journey from comatose to consciousness is long and there is no medical community road map or standard evaluation. There is no prognosis.
Doctors, nurses, therapists, and administrators that are too rushed to take time with her can write her off without a second thought and ones who take even a little time are brought to tears by her progress. On April 17 Stephanie was discharged from Oak Hill Hospital in Spring Hill and admitted to Consulate Health Care of Bayonet Point for care and rehabilitation which started off very rough.
The stress of the transfer and an infection stalled her forward progress and led the team at Consulate to downgrade their expectations of her. We countered with persistence and videos showing what Stephanie had already achieved. In the last two weeks Stephanie has made great progress and the team there is pushing her hard to keep making more.
She’s been off the respirator since late February and been breathing mostly room air for the last two months as we decreased her breathing tube size and added a speaking valve to wean her further. Last week we began capping her breathing tube about 50% of the time and plan to go 100% in the next week which means she is completely breathing on her own through her nose and mouth. We hope to remove the trach very soon. This is a huge step.
She remains able to move her feet and legs on command and can take steps forward and backward while being supported. She is still very tight in her arms and recently only moves her hands and fingers a little bit. We are pushing her hard to improve her hand an arm movements. She smiles when we are with her and is attempting to speak. She was witnessed by others last week when she said “mom” to her mother. Both of her eyes are now open on a consistent basis and she is definitely focusing on us when we engage her.
But she is still not “conscious” yet.
This is the hardest part, the part nobody understands, nobody can predict and that challenges us all so deeply. She’s certainly aware and responding but she does not seem to truly understand her own situation yet. She stops responding sometimes and it seems almost like she’s bored with it and not sure why we keep asking her to do seemingly insignificant things. I could hear her voice saying “OK I squeezed your hand… what gives? Stop asking already!”
In the last month her mom, brother, sister, and myself have gone to a support group started by a mother and her daughter. The daughter suffered a TBI in a car accident about 10 years ago. She is about Steph’s age now and was given very grim chances and her family suffered through similar stages for about as long as we have. Photos her mom shared with me of the experience were all too familiar. With their story, the story of other survivors and our faith we are keeping hopeful that Steph’s consciousness comes back fully soon.
The last six months have been unlike any other in my life and have challenged all of us involved to grow and learn. Together we all help each other and through this update I want to thank all of you for your continued prayers and kind thoughts.