On Monday (4/24/2017), Joseph (13 years old) fell and hit his head, without a helmet, while riding a skateboard. The injury seemed minor at the time and no concussion symptoms were present throughout the day. About 24 hours later, Tuesday night, Jo began to complain of jaw and head pains. Jim and Alex packed up their family and headed to the Maple Valley urgent care. On the way, they noticed that Jo was becoming incoherent. They decided to reroute to the emergency room. When they arrived Jo was in very bad shape. The Doctors immediately diagnosed Jo with a cerebral hematoma. Basically, his brain was bleeding and the pressure on the brain had nowhere to go.
Jo was transported by helicopter to Mary Bridge Children’s Hospital in Tacoma. The neurosurgeon and staff were waiting for his arrival in the operating room. The total time from the ER to the OR was around four hours. His skull was opened during surgery to relief the pressure, which in turn caused brain swelling. Jo was placed in the pediatric intensive care unit (PICU) at Mary Bridge Tacoma and put into a medically induced coma. Jo stayed in the hospital for 2 months before going home needing full time care. Since then here are some insights into Jo's recovery:
- Jo continues to receive PT, OT, and ST services multiple times a week. We have transitioned from home visits to the clinic which actually is a good thing. Jo has been excellent in the car! Many of you will recall he suffered from severe car sickness for months after coming home. Over the past 6 months Jo has been solid in the car with no issues. We are very thankful for that as in home service coverage has expired and we MUST go to clinic for services.
- Jo continues to makes sounds (vocalize) which are deliberate and appropriate to his needs. He can yell when he needs something and will respond to requests to talk. When asking yes or no questions Jo will make a sound to confirm what he needs. He is trying his best to mimic sounds and has actually vocalized something very close to Mama (not surprising) and Bella. It is obvious to us that he will restore his ability to talk if we remain patient. His speech therapist is far more than his therapist and has become a dear friend to our family. It is obvious she loves and cares for Jo as much us we do, as parents we could not ask for more.
- Jo has made some improvement in his ability to move his left side post the internal pump surgery. He has an extremely strong grip and can move his arm from his side to his head. This is very encouraging as we hadn't seen this since the pump was put in place. In addition when he is in his wheelchair he can lift his left leg outward, fighting gravity, and hold it extended for a few moments. Jo can now help mom and dad when transferring from the bed to his wheelchair with his ability to support his own weight (stand w/assistance).
- Jo has also made some progress with fine motor movements and can use a computer mouse with some reliability. It is very slow and obviously exhausting to him but he can use the mouse combined with his communication computer to communicate with phrases. It is not as efficient as we would like right now but he is making progress! More importantly the communication computer works with eye gaze for interaction which can be extremely challenging and frustrating for Jo. Mom and dad tried it out and staying focused is very difficult. Jo was always a wiz on the computer so the mouse must feel great for Jo to regain some of his independence even if it's baby steps.
- One thing that has done nothing but improve is Jo's overall cognition. memory, and emotional presence. Jo laughs often, he is sarcastic and loves to make fun of dad. He remembers everything including friends and family he hasn't seen in years. He regularly spends time with his high school buddies who have spent the night, played video games, and been typical teenage boys hanging out. There is no better feeling as parents then to know your son is with friends, friends who have taken this tragedy in stride, and friends who care about Jo, it warms our heart.
- Jo spends hours a day with his sisters, watching YouTube, talking about their days at school, laughing and listening to music. They miss what once was, but they've shown an amazing resilience for the situation. Mady spends a lot of time with Jo. Many times my wife and I will hear her laughing and singing to Jo. Jo had a special connection with Mady and still does today. Seeing her makes him smile every time. Bella lays with Jo and talks about school and their mutual friends, at times it almost seems completely normal and we can briefly forget all that has happened.
Jo has mad great strides, as you can see in the smile above...there is so much healing and recovery left! Now that the new year has begun - the medical battles continue with insurance coverage, reset co-pays and denials/appeals.
We cannot thank you enough for the tremendous support we've received already. responding to everyone has been very hard on us, this site should give everyone the info they need and please feel free to share widely to anyone who is asking. Anything we post is free to share!