First of all, I apologize for not posting anything here sooner. As you can imagine, this has been a fairly trying fall. Thank you to everyone who has expressed both concern and good wishes regarding Benjamin's health.
Since Ben was released from the hospital last month following his ERCP, he has only made it to school on three days. One of those days, he was sent home early because the teacher thought he looked like he was possibly going to throw up. The other two days went moderately well. That being said, Ben has been sleeping more than usual and he has continued to have a very poor appetite. Because he is essentially non-verbal, it is difficult to assess whether he is in pain. He has burst of energy and good mood, but then he inevitably crashes. He sometimes has entire days where he outwardly seems perfectly fine, aside from the diminished appetite. Yet at the same time, if he goes for too long without getting some kind of pain medication, he crashes hard.
This past Friday he had his second ERCP. Just prior to the procedure the doctor expressed concern about Ben's lack of improvement. He had expected that once the first stent was in place and the pancreas was allowed to drain, that Ben should feel perfectly fine. The doctor suggested that the repeated ERCPs might be a waste of time, and that we might need to consider invasive abdominal surgery. Still, he went ahead with the second ERCP and was able to place a larger stent in the pancreatic duct (it went from a "five french" to a "seven french", if that means anything to you). He was not able to remove the large stone that is obstructing the duct, but that was expected. The good news is that the stone appeared to be a little bit smaller and that the pancreatic duct is dilating nicely. Given that the procedure went so well, the doctor wants to still do the third ERCP in another six weeks, at which time he expects to finally be able to remove the stone and then put in a larger stent to hold the duct open. Once the large stone is gone, the doctor will also finally have access to the smaller stones that are further up inside the pancreas, and the ones he can't reach should be able to flush out on their own.
The hope is that once the stones are out, Ben will finally feel better and be able to return to a more normal life. If we do not see improvement after that, then the next step is invasive abdominal surgery in which the pancreatic duct will be surgically permanently opened wide. I don't quite understand the specifics of the procedure at this point, and I sincerely hope that it will never come to the point where I need
to understand the specifics.
At the moment Ben is primarily with his mother, who has taken a leave of absence from her job as a teacher in order to care for Ben full time. She exhausted her available vacation days long before Ben got out of the hospital the first time, and at the moment she is living entirely off of savings and help from family and friends. If you are so motivated, there is a Fundrazr account that you can donate to at https://fundrazr.com/campaigns/2bMD5
. All funds donated to that account go directly into Ben's Special Needs Trust, and then the funds are dispersed from there to meet his day-to-day needs. Realistically, given the expected recovery time from his surgeries and the holidays surrounding when the next one will happen, Ben's mom does not expect to return to work until after the first of the year. Any donations to the fund will be very gratefully accepted.
And of course, if you wanted to buy copies of my book 3500: An Autistic Boy's Ten-year Romance with Snow White
or my song Benjamin's Lullaby
you can find those links right here on this website. I might even suggest that autographed copies of the book would make a lovely Christmas gift. (As the joke goes, I knew it must be almost Halloween because the Christmas decorations went up at Target.)
Thank you again for your continued support and encouragement, it really does mean the world to my family.