As I mentioned in my earlier post from today, I had an encouraging meeting this morning with the medical team.
When I got to the hospital at 10:00 this morning for the meeting, Mary Elizabeth was out of bed and seated in a chair. She was alert and looking around. I fished her glasses out of the drawer and put them on for her. We waited a few minutes for everybody to arrive for the meeting which gave me some time to sit face-to-face with Mary Elizabeth. She was fully connected, nodding and mouthing words. I asked her to give me a thumbs up with her right hand, which she did. I explained to her why I was there in the morning (outside of the normal visiting hours) and that hopefully we’d get some good news in terms of her ability to travel. At several intervals, she leaned forward in her chair, both to show that she could, as well as to put her face close to mine, and to steal a kiss.
When all the parties were present, we left Mary Elizabeth sitting in her chair to meet in a room adjacent to the ward. All the therapists who work with her, the doctor and the senior sister were present. Each gave their opinion and observations of Mary Elizabeth from different perspectives – medical, physio, occupational, speech, communication and nursing. The picture they painted was of significant improvements in the last week or so, with a marked increase in physical and neurological capability and a decrease in the agitation we had seen in the previous week. This is of course relative – she still has a long way to go, but as I said last month, I’ve recalibrated all my expectations to measure and celebrate even the smallest of accomplishments.
The one unknown is Mary Elizabeth’s ability to get off the tracheostomy tube – and it’s a biggie, since that’s what dictates the mode of transportation home. Two weeks ago, when they removed it, she did fine for 10 hours or so, and then suddenly began having breathing problems which precipitated a return to the ventilator for a few days until they could install another trach tube.
They are cautiously optimistic this time since her level of alertness is higher and her general neurological state seems to be improved. So with that in mind, and with the consultation of a few more subject matter experts, they will move forward with the weaning and are aiming for decannulation (fancy word for de-tracheostomy) next week. Hence, it made sense for me to postpone my trip home until we have more clarity around the tracheostomy weaning/removal and suitability for travel. It’s my sincere hope now that when I return home, it will not be alone!
The last several weeks have really seen a change in her condition, our outlook and the whole situation in general. This difference is echoed in the changing seasons here in London. We’ve moved from early darkness, snow, rain and cold (well, okay there’s still a lot of rain) to spring flowers, longer days and louder and more varied bird song in the trees. I’ve changed locations, and now gladly walk through neighborhoods and streets about which I knew nothing and through which I was reluctant to travel. As a result, I’ve seen an entirely new side of London – albeit a somewhat grittier side – but filled with the vibrancy of a thriving, modern community, combining the centuries old architecture and traditions with newer cultures and customs.
As I was walking back this evening from the hospital, I was thinking about how an experience like this clarifies your outlook and re-arranges your priorities. And it’s what you make of that experience that I think defines the road forwards. That this has been a harrowing experience is undeniable and I wouldn’t wish it on anybody, but we can’t change it and in my mind the only way to make it better is to find grace in the expressions of love and support all around us, and move forward with gratitude and hope for the future. Mushy and sentimental perhaps, but heartfelt.
Thanks again to everybody for your support, prayers and good wishes.
Moved in Sundry Places 
Scott
It was so wonderful to hear about Mary Elizabeth’s progress. Each experience in life helps to form the people we become. Did you ever think you could handle what you are handling right now? God brings us the strength to handle all things. He loves you and Mary Elizabeth and will guide you through this journey. I pray that you & Mary Elizabeth will be able to travel home together very soon.
God Bless You,
Bob & Carol
Dear Scott, Joyous! Such efforts and such great heartedness, better and better. What progress Mary Elizabeth has made, and you with such grace and courage. We are all inspired by you. Every second counts, so enjoy your walks, the flowers, the bird songs and even the rain. We are all with you with great love, Noelle
I read your posts and pray for you both daily- yet have been reluctant to comment as we only know each other “superficially”, through paths crossed at school…clearly my loss. You are truely an inspiration and shining example of the human spirit. Thank you for helping us all remember what is important. Keep up the great work, Mary Elizabeth!
Scott,
I’m so glad to hear of Mary Elizabeth’s improvement. I’m sorry you won’t be coming home but as you mentioned hopefully you will be coming back together in the very near future. We will continue to pray for you, Mary Elizabeth and your whole family. Thanks for your posts. They are a beautiful documentation and a testimate to your love.
Emma
Scott,
This is a wonderful post, so much good news! Our hope to is when you return home it will not be alone as well! Our thoughts are with you and our prayers are for a full recovery for Mary Elizabeth.
Love,
Suzy & Bob
I’m so excited about the big meeting today. I can’t believe how time has flown by. I’ve been following you guys since Mary Grace first sent me an email around the same time you started this blog.
I’m sooo happy all my good vibes have been received and I can’t wait till you guys get home!
Your whole Mary Grace Fan Club is anxiously awaiting the date when you tell us you are on the way! I hope it’s real soon, so you can come and enjoy the good weather here (when it arrives, lol).
Hurry Home!
STILL sending good vibes from Mulberry Street!
Nat
Wonderful news. Understanding all the caveats, it’s great to have the forward progress and hopes of the family reunited state-side. Your positive attitude (apologies for using that “a” word but couldn’t think of anything else) and the dedication of your friends, family and the medical team, not to mention ME’s strength and tenacity have served you well. May it continue to lead to more positive results. Thanks for continually keeping all of us, even those in the bleachers, informed. Debby P.
You are quite right to appreciate what you are encountering (the good parts) in Merrie Olde England. I do not know why, but there is something just “brilliant” and “bracing” about it. Where else could you see Spring coming in February, step into a local pub for a pint and chips (the British kind), or awaken to a “generally grey morning” with “brightening at midday” and “sunny intervals”? Where else do so many appreciate “ringing”? Where else are people so calm, moderate, polite and even walking down the street smiling? Certainly, London isn’t quite as relaxed as Cheltenham was, but I feel sure you know what I mean.
Carry your camera with you wherever you go and catch photos of the places you see every day now, but will soon be confined to memory – which can fade and forget. In a way, your experience has been intimately shared with and influenced by Mary Elizabeth. With this blog, you both will be able to cherish how the Lord has been with you through it all.
~Maria in Annandale
Dear Scott,
You and Mary Elizabeth obviously have such an uplifting effect on each-other, and it’s incredibly inspiring to others too. Side by side, I am sure there is nothing that you or she cannot achieve! You remain in my prayers and I look forward to seeing your London photos one day soon.
All the best,
Mel
Hi Scott,
I pray that you and Mary Elizabeth will be coming home TOGETHER very soon. I am so happy to hear of Mary Elizabeth’s continued improvement. She is lucky to have you by her side.
All the best,
Adrienne
Scott,
I am so encouraged and thrilled to hear about all this great progress. I know MEB is strong and wants to get home to your family. I am so confident this will be happening soon! I am thinking of you both often and sending my love and prayers to you both.
Take good care,
Theresa Koubek
Scott,
I have been out of the country for the past week, unable to read your daily posts (and very much missing them!).
So wise of you to re-calibrate your expectations, and to be patient. Having been away, it is immediately apparent to me that those small, incremental steps, perhaps almost imperceptible in the moment, aggregate over time, and are indeed accretive to real progress.
You, Mary Elizabeth and your family are in our prayers. I hope that soon you will all be reunited back home.
Tim
This is such an encouraging and beautiful post, Scott. I have a complete visual of you strolling down a London backstreet, into the hospital, and up to the smile of your wonderful Mary Elizabeth. So glad to hear that all are in agreement that ME is growing stronger. Our continued love and prayers.
Stephanie and Angelo
PS: Each time I see that you mention birds in your post, I think of a conversation that I had with ME about people who notice little things, like birds in trees. I remember her saying, “Scott sees birds!”