Quick note on Jo's healing. He regularly opens both eyes, wider and wider each day! He is obviously "awake" and sleeping at different times throughout the day. He responds to conversations by shifting his gaze towards the sounds and seems to be more responsive each and every day. It is amazing to think opening both his eyes is the new normal! Jo has always added more movement to his body overall. He will curl his body and roll to one side at times. It reminds me of the opposite of how we stretch out, Jo stretches in because he has been lying flat for so long. I imagine for Jo curling up for a brief moment is a little painful but also a great relief to engage different muscles. This is also becoming more common. It is a great feeling to see Jo move his arms and legs, it shows the neurons are firing and healing. Progress, one miracle at a time!
Jo is coming home today or tomorrow! As of this writing we are awaiting a call from the Dr. on duty to discuss the exact time and date. Are plan has always been today, but we noticed a normal scheduled neurology appointment tomorrow at 10am. Assuming that appointment will occur it doesn't make logistical sense to go home today.
Jo is doing great, he has been resting and healing consistently now for several days with minimal to no discomfort. We think he is feeling ready to go home too. Off course the idea of going home is both extremely exciting and terrifying to Mom and Dad.
We have been involved in every aspect of Jo's care for over a month. At times nurses who are just meeting Jo for the first time ask us for the best way to care for him. Clearly we have become relative "experts" in his daily needs and care but the idea of not having support readily available is scary. Many times we would be in his room watching him rest and think to ourselves "he is ok right?". In those times the nurse or Dr. is just a phone call away to reassure us, those times of quick confirmation of Jo's status are just about over. We still remember early on when the nurses and Dr.s would tell us "look at Jo, not the monitor. Jo will tell you how he is doing." When we get home, that is what will be doing all the time. No monitors, alarms, we check his vitals, we turn him, we handle all his feeding, all his meds, and we own 100% of his care, we are up to the task! In many ways Jo's care when he's home, and any parents care for their kids for that matter, hasn't changed at all, it's just different tasks to keep your kid safe, we've got this.
I don't think we are ready to review where we have been with Jo. These blogs will be the best way for us to remember the worst 60 plus days of our lives, but not now. We have to remain focused on Jo's care and the new normal for our entire family.
Since the day this occurred we have been surrounded by angels, and still are. Some here on earth in the form of family and friends. Some as part of amazing cross country prayer lists. Dozens of angels caring for Jo everyday, nurses and doctors. The angels that fixed our house so that taking Jo home is possible. There were also angels we could not see doing God's work with Jo. Making the impossible possible, always watching over him. Giving his mom and dad the strength they needed to get through this, one day at a time. We will never know how many miracles have already occurred, we are confident more are coming... We cannot thank all of you more, our lives were forever changed by this tragedy, but equally changed by the outpouring of love and support which we never could have imagined.
We will update later today with Jo's final plan for discharge. Thank you all so much!
Jojobinks, you will be home soon! We are ready to have you close, ready to care for you. We know that God will give us the strength to provide what you need while you continue to heal. He will not leave your side until you are whole. We can't wait for your arrival!