Time is moving forward and our days remaining at the acute rehab facility are numbered. Every single day Todd is stepping up to the plate. He may be tired but never a day goes by that he doesn’t flash a smile (and now a wink) and try something new and different. Things that were once impossible, now are expected from his therapists and myself. Here in our rehabilitation world the OT, PT, ST, Nurses, Todd and I are a team. We make decisions to work together towards new goals and they are really ramping up the demands on us. We, each day work hard to towards the goal of healing and independence. It is easy to forget how far we have come when you look at how far you have to go. As Todd gets stronger our days fill up with the increased demands of healing and recovery, but looking back helps keep you grounded. Throughout the day I remain part of the team…. helping, learning, assisting and developing communication, and best of all making it fun and doable. (Kisses are a great motivator!) As the sun sets I return home only to return first thing in the morning to share our coffee together and begin the next day. Our days our full and at times very exciting. Without a doubt we have had our ups and downs, but the good far outweigh the bad. This is very extreme brain injury with a hardcore path of rehabilitation in front of us. This is uncharted territory and unfortunately there is no hand book. It is a most demanding time for us both and the most important ingredient is to keep Todd both safe and protected.
The morning starts with Occupational Therapy and we are still working now until 8 at night if you can believe that. There are breaks in place throughout the day but now Todd is consistantly awake and involved and initiating. His words are sliding back in, he tries tirelessly each and every day to reclaim his voice, and best of all are the remarkable strides he has made in physical therapy, which is his afternoon appointment. This is the very guy that when we landed could barely move any body part without assistance is now on the paralled bars and finally gaining the strength in his neck to hold his head up and nod yes. Each therapy discipline has had great moments that get shared up and down the halls with therapists and nurses ……..all of which are rooting for us. Good news and achievements travel quickly around this place.
The meds are being tapered down in a very conservative and measured approached. The valproic acid will be all but gone at the end of the month. With attention already turning to the Dilantin. The 3rd medication will remain untouched to assure Todd has no additional complications……I think everyone can agree he has had enough of that. Once these medical issues have been addressed we are eligible for the next step.
It is the dedication that Todd and I have shown that will make the next step doable for us. Last week Todd and I (accompanied by part of our team) left the facility (by car) for a brief but overdue visit to our home for an evaluation. We passed with flying colors and with a few adjustments and a couple of new things fabricated (by non other than our kick ass friends) our home will soon be ready for Todd to leave the hospital environment. It has been over 8 months since Todd was home. We are nervous and excited for this big big new step.
Concerns? Questions? of course. Rest assured we have been subjected to many and have demonstrated extreme confidence, realism, and knowledge. We explored alternatives like subacute facility, which is considerably farther than umm a zero mile commute, and another name for a nursing home which is not the best place for Todd or nearly as delightful. We have full support of the staff in the decision that has been made. It is hands down best for both us. I imagine a lot more peace and rest and relaxation for us both…cause the work is already a piece of our puzzle. (Because I am there each and every day all day there is not question among our team and advocates as to whether I understand the demands of taking Todd home) The therapists during their home visit found our home to be one of the best they had seen for making this transition. We will be returning to home under the watchful eye of Rehab Without Walls, Todd will at our home receive the therapy he has been getting now. We will have the OT (Occupational Therapist), the PT (physical therapist), the ST (Speech Therapist), NeuroPsychologist, and social worker. The scariest part of this equation is the increased expenses once you leave the facility environment (although inevitable) with all that team we will no longer have the nursing component. This will be out of pocket…. But a small price to pay for Todd to sleep well at night and be home. Todd still needs 24/7 care and I will require home care professionals to manage this.
That said, in an amazing show of solidarity, creativity, community, and friendship the next event is well underway. In July (again super kick ass) friends have outdone themselves in an event the speaks volumes of Todd and the people who love and adore him. A kinetic sculpture and fundraiser come together as one! So it is more than clear that we can and will bring Todd home…..it is more than a possibility. While Todd will not be able to come and see what has come together in his name I will!….. and I will bring back every little detail I can to show him. This will be a unique chance for me to hug so many of you that I have not seen either at the hospital or in my cameo appearances in the outside world. (Which is actually called having dinner.) We are, dear people, a rare breed. Neither the hospitals we have been at/or staff have witnessed such committment in a community of friends and family. (OR at least to be super duper correct it is a most uncommon occurances, I have seen it with my own two eyes) Clearly, Todd did a few things right along the way. The intention of this fundraiser is to support and facilitate this transition. Thanks to some fancy footwork and involvement of a nonprofit all donations will be tax deductible….. doesn’t that sweeten the pot!
In time I see cooking dates, artistic explorations of all sorts, and all kinda of things but I am currently focusing on now and the next few months. Soon there will be increasing opportunities to share and help Todd develop and relearn or just laugh and smile. I see home as a place to connect.
We are making plans. Big big plans……and arrangements. These preparations are keeping us busy and build on an already demanding schedule….. I will try to keep you all more in the loop, not keep you wondering for so very long.
p.s. fresh pics of Todd coming early in the week.