Good morning all….and good night to those of you still up!
I swear you can’t turn your back on Todd and the hospital for 2 minutes. I had a meeting with our social worker and as we left Todd’s bed I had noticed things were different with his IV (set up for travel), so inquired as to where he had been this morning. New tests? No one seems to have anything to report, so we went down the hall, planning to revisit this after our conversation. So while we were away from Todd’s beside they removed the trach! Totally didn’t see that one coming…… and for good reason. The night before the neurosurgeon had told me it was their (team of 3) recommendation to leave the trach until after we were flown home…. well in their big thurs team meeting apparently they came to a very different conclusion! This is good for us, while his throat is sore Todd seems happy to move forward and he was already making grunts and sounds warming up that voice of his and swallowing. Of course we all know how HUGE and informative hearing Todd speak will be, whenever he is ready! S,o every day or two we have a new goal, simple way to look ahead without being overwhelmed….. First it was out of the getting out of the ICU, then it was swallowing, then having the trach removed. That sort of thing…. so I set a new goal. “So lovey, now that the trach is out our next goal is to smile.” The response was immediate and in no way half ass! I was jumpin’ my eyes watering, kissing him, and yup I got another one too!”
During the day he raised his eyebrows to the nurse & Ellen ( social worker) in a greeting and acknowledgement. We had the coolest conversation (twice) about work with Johnny on the two art projects. He totally thinks it is a great plan and I explained to him that one way or another we were going to start up on this even before he was out of the hospital. If he could’ve, I would have gotten a high five, but the high-brow raise is his version! We were having fun finally looking together at the cards, and the super bitchin horsey pictures, and cool kid art that were sent our way….. I don’t know if any of you noticed but Wendi Flybutter, the Jenkies, Judy & Brian et all were on card making overdrive! We had a couple jokes about that one, never underestimate the power of those artsy girls and all that joined in! So VERY VERY cool, we are really really enjoying them! He went to sleep when I read him Jenn Barr’s letter, I guess I was going on and on and on….. It was three pages after all! He totally focused intently on each card and we took our time enjoying it so by all means send more! We can’t keep reading the same stuff everyday, it will be of course me that he finds annoying, you all sweet people will be off the hook…..but not for long.
I lot of you have asked and spoken of music…..I have not been able to figure out a polite way of sharing music without putting headphones on him. I do not have a portable system for the cds – have some great ones, do have ipod, but still trying to think of a polite way to include music without disturbing the other patients in the ward. It could be a super cool part of our plane ride home….HMMM. New good idea. So I am singing “You are My Sunshine” way too many times a day, my internal jukebox is completely wacked and I only remember the chorus to any of these songs so the repetition is brutal at best, Johhny Nash “I can See Clearly Now”, then worst of all Chicago “If You Leave Me Now” and that is it! I think we should consider this a major issue….I believe his first word may just be please STOP!!! with a smile of course.
As for our return…..yup we are almost out of these woods here. The word on the street is Todd and Alex are taking an air ambulance home. Cannot tell you yet where or when, but know it is soon and we will be returning to the Bay Area. Most likely San Francisco or East bay……all up to some Blair family strength and insurance policies……So fill up our mail box with reading material!
Time to start thinking about rehabilitation, our next step. Babalou and I were talking again, and here is a great way to move forward. We should all think of the most valuable thing Todd has taught us each, individually, and be prepared to teach it to him. We all carry a different piece of Todd and therefore can stimulate a different part of this amazing human. Through art, bodywork, water, and much much more we can bring a great deal of pleasure to this process. Todd has always found something amazing in each and every day, like the sunset or a glass of wine or a blooming flower and knowledge, and I think this part will not change.
AND HERE IS BABA…
Yes things are moving forward and I can verify the fact that Todd is in there and working things out in his mind. He looks the most like himself when he does his totally body yawn. It’s great. I am not one to mince words (as many of you know) or go on with false hope….but yesterday I saw our Todd in there. He is still hidden a bit and will need to have his memory refreshed (to put it mindly). So everyone get your lists together of your favorite Todd fun facts and info. How you can help most, once Todd returns, is to give him consistant input and knowledge. A strong support team is indeed what he has going for him. Think in terms of the long haul or perhaps a class you took from him.
We did have a couple gurggles and grunts yesterday and I am certain that words will come soon. He is looking somewhat confused and dazed still which is to be expected.
Now both Alex and I are working on the joys in life and finding laughter around hidden corners. Alex is once again laughing and I think enjoying a bit of Amsterdam despite all she has been through. She is a strong creature our Alex. I am happy to be on the support team and close at the moment.
Thank you all.
Todd + Alex and Baba…. and soon Levon who is on a train from the airport so I better get dressed and pick him up.