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 [...]

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 [...]

9. Cute from the Inside Out!

So...I was sitting with my amazing nurse practitioner today, and we were scrolling through Ben’s CT scans. As the images were moving past, me (being the smart ass I am) said ‘I think I can see what the problem is. There is a puppy inside him’. We both looked again and burst out laughing! Hmmm...no [...]