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).
Since last I posted, things took a turn for the worse for a while. He had been improving slowly but steadily each day all week long, but then last Saturday it seemed like we were hit with a perfect storm of bad circumstances. The output of bilious fluid into his abdominal drain suddenly increased dramatically, indicating a leak somewhere internally. In concert with that Ben suddenly became much more lethargic and completely unwilling to get out of bed except for short trips to the bathroom. Just the day before he had been walking several times per day and for good distances, and now all of a sudden he could barely move. Unfortunately, not only was his primary doctor out for the weekend, but the other doctors we had been seeing each day since the surgery were also out and replaced with what seemed like the second string medical students. They knew nothing about Ben's history, and were not particularly helpful in addressing Ben's sudden regression. Even worse, that day we got a truly awful nurse who was the opposite of helpful. It was just a miserable weekend all around, and our hopes of Ben being released to go home on Sunday were completely dashed.
Thankfully, Monday morning saw the return of Dr. Christien, Dr. Karam, and one of our favorite nurses. The doctor repositioned the abdominal drain, and the output started to slow down again at least a little bit. By the end of Monday Ben was looking better than he had over the weekend, but really not quite as good as he had seemed on Friday.
We still anticipated being in the hospital for a few more days until the abdominal leak dried up, but Dr. Christein surprised us by declaring on Tuesday morning that Ben was well enough to go home but that he would have to keep the drain in place for a few weeks. With another storm approaching, we did everything we could to get out of town as early in the day as possible but it was still after 4pm before we made it on the road. That night Ben's maternal grandmother was kind enough to find us a pair of hotel rooms to stay in for the night somewhere in Georgia.
After a solid night's rest and another several hours of driving, we finally arrived back in Central Florida on Wednesday evening. Ben had been largely silent for the entire drive, and only spoke in a whisper the few times he said anything at all. He mostly sat and gazed out the window with a thousand yard stare, and went for brief walks every hour or so when we stopped. All of that changed when we hit Winter Garden. All of a sudden he started to recognize landmarks and the names of places on road signs, and he started talking up a storm in full voice. He was laughing and grinning, doing lines from his favorite movies, and signing songs with his mom. It was really nice to see him so happy, even as it wore him out completely within a matter of minutes.
Unfortunately, exactly what we were afraid of happened the very next evening. While he was hiding under a blanket trying to have some privacy, he pulled out his abdominal drain. It was nobody's fault, the truth is that nothing short of physical restraints were going to keep that drain in. We had just hoped to see the leak slow down more before it happened. After frantic consultations with the doctors in Alabama plus the surgeon here in Orlando who had done the three ERCPs on him last fall, we arrived at the conclusion that Ben needed to go to the emergency room the next morning for a CT scan.
We wound up actually spending pretty much all day at the hospital on Friday. Between the CT scan and an x-ray, the doctor was able to pinpoint the exact location of the tear that was causing the leak. It was happening right at the join from the bile duct to the small intestines. The doctor performed yet another ERCP on Ben that afternoon, and was able to place a large stent through that section. This will allow the bile to drain naturally, while giving the torn area time to heal. The stent will need to come out in about 6-7 weeks, by which point the leak will be completely healed. Best of all, they decided that there was no need for Ben to be admitted to the hospital. He went back home with his mom that evening, and they have been resting and recuperating ever since.
Now, I'm not gonna say it was a good thing that Ben pulled that drain. Clearly, putting him through yet another surgery (particularly an endoscopic procedure that required him to be positioned on his belly for an extended period of time) was pretty rough on him. He would have been much more comfortable just relaxing at home and letting the drain do its thing. But all things considered, I do think that it was inevitable for that drain to get pulled prematurely. His autistic behaviors were just not going to allow him to leave it alone. That being the case, if it had to happen I am glad it happened when it did. If he had pulled it sooner, everybody would have still been exhausted from the drive back home. Similarly, if he had pulled it on Friday evening instead of Thursday, then none of his regular doctors would have been available at the hospital to deal with it. It would have been a very long weekend, probably admitted into the hospital for two days until an ERCP could happen on Monday. So again, I am not thrilled that it happened but at least the way it happened made for the best possible outcome.
Ben is still exhausted, and has very little appetite. He is on so many medications that his mom has resorted to using a spreadsheet to keep them all straight. He is just plain beat up by all of this, and is going to need several weeks to recover. But at least he no longer has any tubes sticking out of him, and all of the tests and scans consistently show that his body is recovering nicely from the surgeries. I don't expect he'll be doing much of anything this week besides sleeping, snacking, and maybe watching some videos. Hopefully next week his appetite will start picking up and he will start showing some more energy. Realistically it will be March before we might start getting a clearer idea of what the New Normal is for post-surgery Ben.
One last note, and I have posted about this before: Ben's mom has been out of work on FMLA leave to care for Ben since August of last year. A Fundrazr account was created to help assist with the financial hardship, and all monies donated to that account go directly into Ben's Special Needs Trust. If you are so inclined, any donations would be gratefully appreciated. You can find more information at https://fundrazr.com/campaigns/2bMD5.