Ok...today started off rather challenging in the caffeine sense. We were up at 6:00 a.m. again because we had to meet the surgeon at the hospital at 7:30, and I wanted to make sure I got there in plenty of time (he had a surgery at 8:00). I discovered an espresso machine in my hotel [...]
So today was a stay-in-the room day. Having given up on my dream of a decent cup of coffee in the morning (sniff...just a minute...I need to take a moment), I lowered myself to the shame of instant coffee. Anyways despite my somewhat dissatisfied start, I was willing to face a day of isolation, food [...]
Alright...things have escalated quickly for us from a week ago. We noticed last night that Ben’s tiny red dot has become more prominent and it seems to be scabbing up a bit. I sent an email to our team in Montreal at bed-time last night, and I woke up with an answer this morning. I [...]
I certainly owe you guys an apology. I wanted to update you all when we arrived home and got back into routine, but....hmmm...that never happened. Instead we came home to a zombie apocalypse where toilet paper became its own currency and hand sanitizer became the new truffle. Anyways, we are home - we are safe, [...]
Well - we are back home again. Ben, of course, was thrilled to see his dog again. We both came back a little tired, but we are slowly unpacking and building our new routine. I have decided to keep the structure of the school schedule at the hospital to help us stay on track with [...]
Things started moving very quickly once Ben was off oxygen. He started taking little walking trips and was able to go back to school. He is at the point where we just need to manage his pain and let him heal. He is also on iron to help him replenish the blood he lost. So...home [...]
Ben’s health has increased exponentially in the last 24 hours. We have been transferred back to Shriners, which does our hearts all good. It again feels like coming home - these are our friends, our family. I am still overwhelmed by the emotion of coming back - they take Ben in and gently wash the [...]
Despite my excitement over getting extubated in the OR, Ben had an awful first night. His oxygen sats dropped to the low 80’s, and he was visibly struggling to breathe. His heart rate and RESP rates were high, and it was apparent he was working hard to breathe. We used the oxygen mask for a [...]
We were up super early this morning. I woke up at 4:30, finished packing and got us ready. We will not be returning to our hospital room because when we arrive back at Shriners they will put us right across from the nursing unit. So...that means packing up, and it’s amazing how much crap you [...]
So tomorrow is the day we've been dreading since our last big surgery three years ago. We will start preparations tonight and we will be the first and only patient for our doctor tomorrow. I will head over the the other hospital at 6:30 to register us as inpatients and take care of all the [...]