OK, it is November. Four months post 4th surgery and 1.5 years post brain injury. I hadn't even realized that I didn't send my 'draft' after surgery...and i really want to apologize as I know how many of you continue to pray for Kellen and ask how he is doing. So much has happened...especially this past month as the McCauley family said goodbye to our beloved Ann. Blessed wife of Frank, Mother to Teresa, Mark, Matt, Mary, Jim, John and Joe. Amazing mother-in-law, sister, aunt, grandmother, great-grandmother. Thank you for your prayers and condolences. She is truly loved and missed. Here is the journal entry I wrote a couple months ago:
'When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith is knowing one of two things: There will be something solid to stand on or you will be taught how to fly.' Barbara J. Winter
Forty-eight hours after surgery and ICU stay, we left St Petes with kellen and his beautiful round head :) Dr. Lazio showed us pictures of his 'new skull' and also of the skull piece that had been disintegrating, being 'resorbed' by his body...it was sobering to say the least, and difficult to imagine that Kellen's body had been working overtime for more than a year to be rid of it. Even though a year ago his skull piece looked 'really good,' it wasn't 'viable.' After removing his white turban, the one that makes him look a little like a Q-Tip, his head was back to its 'normal' shape. It blows my mind how this was done with modern technology. Just a week and a half before surgery, kellen had a CT Scan that circled his head. They took 3D imaging of his skull and uploaded it to a disc that was then transferred to a young man in his 20's named Nate, who was patiently waiting in a room next to x-ray. He is the northwest sales rep for the 'skull company' that manufactured Kellen's skull piece. He works mostly at trauma hospitals like Harborview, but traveled down to Olympia for Kellen specifically. (He told us he would be in the operating room with Dr. Lazio.) He then sent the image to a person on the east coast who was waiting for it. When they determined they had a good picture we were then able to go home and wait for surgery the following week. With the 3D imaging, they were able to make an almost exact replica skull piece out of hard plastic which included holes for ventilation (sort of resembles a hockey mask). It would fit like a puzzle piece. Apparently the plastic is hard enough that it wouldn't break even if you stood on it...I hope no one ever stands on Kellen's head. As Aunt Shawni says, 'That would be a 'bad one.'
On a scale of 1-10, Kellen's pain had fluctuated between 3-5 that first week home, depending if he had tylenol or not. Not too bad for the type of surgery he had, where oxi-codone is typically prescribed. The first two nights home, Kellen had some difficulty with nausea and numbness on his left side. I reread the 'take-home' sheet they gave us from the hospital which indicated that if he had persistent nausea, increased numbness or pain (just to name a few) to call the doctor immediately. I asked myself as I have throughout the past year, 'Do we call the doctor now, or is this 'normal?' Since nausea wasn't 'persistent,' we decided to pray first, act second. Within 10 minutes, at 3am, he fell back to sleep. Nausea gone. Dr. Lazio asked that he come in before his 2-week post surgery check-up to look at his swelling that felt 'liquidy' to the touch. There was some concern it could possibly be cerebral spinal fluid leaking as it was 'throbbing' with his heart beat. We were told to 'wait and see' if the swelling became worse or if there was increased redness or oozing to call immediately as infection risk was high. We persisted in our prayers...and the swelling subsided.
We were given the 'ok' to travel to San Diego for therapy 3 weeks after surgery. Although he was scheduled for 5 hours/day, his therapist quickly determined that Kellen was only able to endure 2 hours/twice daily. John and Brendan joined us for a long weekend, but due to Kellen's continued recovery and fatigue, we stayed close to the hotel and pool :)) It was good to be together.
On the last day of therapy, after two weeks of stretching and repetition, Kellen moved his middle two fingers in an 'I love you', 'rock on' sort of way. :) It was a moment we won't forget. We all erupted as it was so unexpected! To give you an idea, when Kellen attempts to move his fingers, he is told not to work too hard or his grip will be too tight, but to work hard enough to get them to move! His brain has difficulty 'planning' how to do a particular task. He knows how, but there is a gap in fine motor planning. When he tries something new, it exhausts him! He becomes even a little dizzy or nauseated as his brain tries to accept and plan new skills. Repetiton is needed so he doesn't have to 'think' about moving, he will eventually do it automatically...think newborn baby trying to grasp a rattle and then attempting to put it in his/her mouth without smacking their nose or eye. The movements are a bit jerky, unbalanced and not very smooth. You get the picture...
Kellen had fully planned to return to WSU this Fall to room with his brother in the fraternity. However, after this last surgery and subsequent therapy, he realized a greater intolerance to noise and commotion. It just wears him out. He will take a couple classes online and continue therapy as often as he is able. People ask if he continues to see progress...YES!! Even though brain injury recovery is like 'watching grass grow' as his therapist says, progress is being made and that is what helps kellen push through the plateaus. He really does hope to get back to college as soon as possible...we make plans, but we also take things one day at a time. He even came to the realization that it might be best to have his own dorm room where he could have quiet time when he needs it.
Lastly, Brendan has been trying out for the WSU golf team this past week after practicing all summer. It had been a year since he played and finished his high school golf season. He dedicated his summer to working and practicing at the golf course. There were 6 trying out. He was leading the tournament after the first 2 days. On the 3rd day he was one back after a 71, 74, 74. The last day he and a boy named Austin both tied and shot another 71 but he was 1 stroke shy of making the team. He was hoping he would at least be able to practice with the team as he is friends with more than half of the players! They have all been so supportive. :) Such a blessing.
Sorry the post was long-winded and maybe a bit dated. As I prepare to press 'send' on this beautiful November morning I am reminded of the blessings throughout this journey, especially God's love and care for Kellen and our family. Kellen spends his days diligently and patiently doing therapy on his own....sometimes more than 4 hours each day Repeating certain movements over and over again. I have never heard him complain. His friends are not in town so he is by himself most days. What seems to stand out to folks is that even in therapy he has a smile on his face...he jokes & chuckles about being a 'recluse' at 21 years old...but he remains positive and hopeful in the recovery process. He is able to rejoice when he hears of his friends' successes and joys...he NEVER feels sorry for himself, or never verbalizes it anyway...We are so thankful as we continue to see the gift and love of God in the small joys as well as the difficult moments. Quite frankly in the moment, i enjoy the positive, happy times more than the trials. :) BUT I am learning to find the 'blessing in suffering' as scripture talks about and like Kellen seems to do... It is helping me to rely completely on God who continues to be the source of strength for Kellen and our whole family as our faith and TRUST in His plan for our lives unfolds. We love you and are grateful for you all.