So much has happened in the last 48 hours, I don’t even know where to begin. Do I go for shock value and start with Ben and me walking into the emergency room at midnight, both covered in vomit? Do I go for a sweet and comedic tone, with Ben taking a hot bath earlier that evening and demanding to be left alone in the bath with the lights out and a single candle for illumination while listening to Enya? Or do I start with a moment of raw terror, with Ben fighting a 102.5 degree fever and shivering so violently that the entire bed trembled beneath him? The truth is that these last two days are a jumble inside my brain, a nearly incoherent mixture of fear and resolve punctuated by moments of nearly sublime comedy. If you had asked me at any point this weekend where I imagined I would be tonight, the answer “sitting by the fire pit at a theme park resort” would never have even crossed my mind, and yet here I am. Literally nothing makes any sense at this point, so I am doing the only thing I know how to do – write my way through it and try to find some kind of coherent plot. It won’t be an easy task.
I suppose you could argue that last Thursday's final surgery marked the end of the eight-month ordeal of Ben's illness, but for me it was Monday morning that truly signified a return to normalcy. As of this week, Benjamin has returned to school full-time and his mother has returned to work full-time.
As they say, a picture is worth a thousand words:
Today was a milestone day in Ben's recovery from his abdominal surgery. This morning he returned to school for the first time since his surgery on January 31st. He was very happy to be there, and everyone was thrilled to see him. Overall he had a good day, but as expected he ran out of steam before the day was over. He returns to school with several significant limitations: no lifting anything heavier than his lunchbox, no PE or other strenuous tasks, and of course no tickling or poking at his belly. The plan at this point is for him to continue going to school each day and to stay as long as he is physically able without overextending himself. We expect that it will be half days for a while, but for him to improve day by day. There are two and a half weeks left before Spring Break, and ideally he should be back up to speed and attending normal full days by March 31st.
I apologize for the lack of updates, as you can imagine the past few weeks have been long and pretty overwhelming. The good news is that Ben is now back home resting, and thus far it seems like the surgery has been a complete success. He still has a long way to go before he is truly healthy, but hopefully he is done with hospitals and surgeries for a good long while (with one exception, which I will get to in a bit).
Just a short bullet-point update tonight:
· During the surgery on Friday the doctors took a sample of the islets and had a culture done. That culture showed yeast, which apparently happens about 50% of the time. That is the likely culprit for the elevated white cell count. Ben isn't having any visible symptoms of an infection (no fever, fluid in drain is clear, etc.). They put him on antibiotics to treat the infection, and it should not delay his release from the hospital.
Just a short update tonight. The difference between Yesterday-Ben and Today-Ben was really amazing. He still has a long, long way to go, but this afternoon I began to see flashes of the real Benjamin coming through. His walks were longer and more confident, and even when he was sitting he was actually sitting up instead of leaning to the side against a wall. He also listened to his iPod today for the first time since the surgery. Tonight, as I was leaving the room, he had surrounded himself with stuff - his iPad, iPod, DVD player, a book - and was doing his thing where he was watching part of a movie in one language on one device while simultaneously watching a different movie on a second device in an entirely different language. That's Ben.
As with my last post, so as not to bury the lede: Ben is recovering well from his abdominal surgery, and the doctors are thus far satisfied with how he is doing. His blood work continues to look good, he is making regular trips to the bathroom, and he is making regular walks around the hospital floor. So far everything looks good.
I don't want to bury the lede, so here's the big bullet point: Ben had his abdominal surgery today, and it appears to have been a complete success. He is currently resting in his hospital bed, and thus far everything looks good.
After yesterday's long series of challenges, today was actually blissfully uneventful. I woke up reasonably early, while Sara and Ben were still asleep in the next hotel room over, and went out to get some breakfast and evaluate the road conditions. Things looked substantially better than the night before. Even though it was still below freezing, the combination of direct sunlight and moving traffic had already melted most of the ice from the lanes of travel on the main highway. By 11am when everyone was up and ready for travel, you could hardly tell the roads had been treacherous the night before. There were still a few small ice patches, particularly on the bridges, but for the most part the roads were clear and traffic was flowing normally.