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 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 [...]
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 [...]
Well...I definitely feel like an update is in order...it's definitely me - not you! When September hit this year - I knew I was going to be busier than ever, and I was right...so let's start catching up. So, just to refresh...in August I posted about Ben's lump on the back of his neck. We [...]
I bought this book almost two years ago. I knew that the syndrome discussed in the book was also my son's syndrome, but I just didn't want to read a book that was going to be a downer. Finally this summer I pulled it out and literally couldn't put it down for three days. My [...]
We've had a pretty amazing year, but I have had some worries. The most significant worry this year was and is "the lump". I started noticing "the lump" in about November/December. I think it was there before that, but to be honest it didn't really start to freak me out until about February. It started [...]