July 2008


So we have left Herrick. It is a mixture of many feelings but we miss those guys. Those walls and those people had become our home, safety net, and family. These became the people we depended on and those who we could trust to keep Todd safe and improving, they were our advocates and army. Today began the new therapy team and they are off to a great start…..it is new. We again are amidst a full and demanding schedule of therapies but we now have the advantage of our home turf. New in the world of TBI change can be distressing for Todd. So we are trying hard to get him some rest and me too. It is the fourth day and it is expected to take at least a week to find our footing. Our home and therapy studio are coming together and Todd is happy to be home…..but as with anything in life not knowing what is next can be challenging for the best of us. It feels like we were standing on the edge of a high beautiful rock formation just above a cool pool of water and are now in the air between the jumping point and the cool water below. Thing is even when you hit the water you can’t really see what is below.

 

Before we left the hospital we took Todd on a field trip to himself experience the beauty of the gear wall…. that and the video have allowed Todd to first hand feel and see what can come from all the love and caring that surrounds him. It was an amazing sight to behold. It was quite a treat for us.

Special Note: We are still filling positions for a regular caregiver team so if you know anyone special in this arena, that can bring a smile to our Todd’s face please send them my way. Short shifts mostly am/pm ………mid day is covered by therapy. I thought I would let you know in the event that something good could come our way on this front.

If you have any leads call me or email me at mizalex@yahoo.com. Thank you.

Is there a word that means thank you mixed with awesome? Thank you falls short. Gratitude does not seem to carry the same weight mixed with the fantasticness of you people who have stood by us and came out this Sunday. You are an amazing bunch of people. I loved the meeting those individuals who stand behind the people who stand behind us. The smiles and power of love manifest itself into this amazing wall of gears and an event so unique…… I really reminded me of how alone we are not. What a beautiful web of friends and family we have woven.

Some of you heard me speak of Todd and some missed it. My next post will talk of the amazing place we are post surgery.  Many faces I saw in photos but never crossed their path……how did that happen?! To you all I thank you for being now part of our success story, our miracle, and our healing. IT is a long road to recovery but because of you all we are now able to do this at home.

…….and in a show of amazing solidarity there I stood among friends, family, and therapists from both our hospitals (our own personal army). There are days I want to stay in bed and pull the covers over my head and there are days when I walk around smiling at how amazing and resiliant Todd is. Together our personal army has helped us in ways that are less than transparant, less obvious to the untrained eye.

So I thank you all for your many individual gifts. We will never forget and we will never take for granted.

With love from the unstoppable team.
Alexandra (and Todd)

p.s. don’t think I didn’t notice that I set you up for the “booger on the wall story” and then failed to deliver. I was nervous. I owe you one though!

The last couple of weeks have been full of ups and downs.  I now have the first opportunity to share with you some of the highs and lows of this roller coaster.  On June 15th, Todd was admitted to the hospital with a 103˚ fever. The weeks leading up to this moment were not without concern but they had all seemed to fade away or found some explanation that quieted the mind temporarily. The antibiotics Todd was put on did their job, while the search for the cause of the fever was thorough. The fever was on its way down by the next day and we were released back to rehab by end of the week Thursday. The staff was so relieved to see the ever inspirational Todd and our room was active with the rounds of docs, nurses, and therapists sticking their faces in to welcome Todd back. Clearly this team is going to be just as happy as sad to see us head home.  They all are rooting for Todd!

Tuesday came around as did a follow up CAT scan and the comparative results of them. Looking back it appears that we came to the US with a slightly clogged shunt. The pressure has been building ever so slowly and things were coming to a head. The fever could be considered a gift…. Something which had people looking closely at Todd in a way that he hadn’t been examined in some time, this does in no way suggest he is getting anything but excellent care in our current facility, but there are so many grey areas. Mostly we have been on cruise control you could say. With brain injuries there are no answers, no road maps to guide and provide dependable answers…  it is without a doubt a path riddled with discoveries, challenges, and both small and large battles.  It is impossible to determine at times what is a result of the injury? What is a result of the massive medications? …..and so on. So the team here must examine every approach and issue individually, systematically isolating each in a process that can take a great deal of time and attention.

Tuesday as I returned from lunch the doctor told me Todd would be going in to surgery the following day for a shunt revision procedure. I was in such a state of disbelief I actually phoned the neurosurgeon’s office myself to confirm we were indeed on the schedule for Wed.

We were.

Wednesday was the longest day in quite a while which really didn’t end until I went home for a shower the following day. In the beginning of the day Todd’s surgery was almost bumped to the following day but with some patience and perseverance we made the day’s schedule. Todd was most likely the last surgery of the day. The surgeon removed and replaced the primary shunt and removed another shunt in its entirety. The shunt that was removed was the first one to be surgically placed during our time in Amsterdam. To see it gone is most welcome change for Todd.

Wed June 25, 2008. The day some big problems found a SOUND resolution. As the days have gone by we have found a fresh, new Todd remerging. Drugs gone, shunt gone. Now we can really get to work.  We are seeing some amazing transformations and we are just a few days post op! Can’t even wait to see what comes by the end of the week, never mind the following week. Todd is happier and more clear than I have seen him in a long time. We both are.

Some have said in response to these last few weeks, why wasn’t this found sooner and I will tell you that it is all in good time. Things must be ruled out systematically and Todd was in a good and solid place when this discovery was made. He was slipping away but strong and ready and understanding of what was going down. It was just in time.

Our trajectory remains the same ……we will head home but the discharge date is now up in the air. We need to make sure Todd first receives all he needs for us to succeed at home…and more importantly that he is medically stable and safe. We are back under the watchful eye of the rehab facility with a lot to look forward to.