We arrived home on Sunday, and we were happy to do so. I found this trip a bit more stressful than prior trips. The surgery component was very stressful for me, made easier only with my trust in our surgeon. It is a difficult thing for a parent to hand over their child and have [...]
We woke up this morning at 4:00 a.m. to get organized so we could head to the airport by 4:40. Most of the packing was already done - the tricky part was closing the suitcase. I normally take two suitcases, but we are usually here for a few months. I am thinking this will be [...]
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 [...]
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 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 [...]
As my six year old son and I were told less than a week ago that we would be going to live in a hospital 3,500 km away for a few months, I have been mentally bracing myself for some difficult questions he may or may not ask. Having said that, I wasn't ready for [...]