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 [...]
Category: Mom’s Blog
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 [...]
11B. Surgery Day Recap
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 [...]
11. Surgery is over
Ben is doing well after a 7 1/2 hour surgery - he is stable and still asleep. He has been extubated and is breathing on his own. He did not require ICU, which is great - he has far less facial swelling than last time. Will update later. Thank you to everyone for all your [...]
10. Tomorrow’s surgery
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 [...]