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 [...]
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 [...]
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 [...]
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 [...]
We were transferred to Shriner's Monday. It was a crazy, busy day. Once we arrived, I had some paperwork to do and Ben was examined regularly to ensure that he was doing well because he had just gotten off anesthesia. So far, so good. Ben has 5 screws (posts/pins) installed into his head holding his [...]
Despite a way too early start, the day has gone great so far! I was up at 4:30 - getting ready and packing up. I work Ben up at 5:15 to have some juice and get him in the shower. We bathed him last night in chlorhexidine and washed his hair with it, but I [...]
Yesterday was a busy day. We were mostly at MCH (Montreal Children's Hospital). We started out at the Shriner's for a quick OT assessment. They were checking Ben's mobility and sense of touch as well as measuring him for some upcoming equipment. This will set the baseline standards for him. We also got to meet [...]