Packing List and update July 13, 2020

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 [...]

Quick Update… July 7, 2020

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 [...]

Boy – it’s been a while! July 2, 2020

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, [...]

16. A Happy Reunion

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 [...]

15. We’ve Been Shrinered

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 [...]

14. Back to Shriners

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 [...]

13. Post Op Days 3 and 4

So over the past few days, it became clear that Ben has an effusion (fluid in his lung cavity). It’s likely that blood seeped out and collected there post-op, which is somewhat common. This compressed a portion of his lungs and made it more difficult to breathe. His hemoglobin level was a bit lower from [...]

12. The Last 48 Hours

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 [...]