Write this down in the history books. Zachary Penrod was discharged from the hospital three days earlier than expected. Yes, you read that correctly. For the first time in the history of Zack, something went BETTER than predicted. Even his surgeon was surprised. She kept knocking on wood every time we talked about how well he was doing. I am still in shock, but in a good way.
Zack and Jim participating in Easter fun. Aren’t they the cutest?
Zack was officially discharged at lunchtime on Friday. Just to be safe, we told his doctor we would spend one more night in town. Hanging out one more day worked great for us because it allowed us to meet some friends from our high school days for dinner. I think we all look pretty great 30 years later!
Mini Munich Reunion!
Before we left the hospital we were able to talk to Zack’s surgeon again. We were curious to know where in the colon the distention began. Was there a gradual transition zone from good to bad? Did any of his colon look normal? Turns out the answer to both questions was no. His colon looked bad from the beginning of his large intestine all the way to the end. That makes it easier for me to let go of my dream of saving it, but it still bugs me not to know why it does not work. I guess I will just have to get over that.
We also discussed a few theoretical plans for the future. The best plan, in my opinion, is for Zack to keep his ileostomy for a long, long time. Given his ileostomy track record, we felt it would be appropriate to discuss what we would do if he prolapses or obstructs again. If that happens, we will move forward with a colectomy. There is a good chance Zack’s surgeon could perform it laparoscopically as well. How crazy is that? By avoiding opening his abdomen, the recovery would be much easier and much quicker. We were also able to talk to the pain team about a future colectomy pain plan. They gave us their suggestions and we filed them away for the future. Even though we all hope this ileostomy will be the one that works forever, it is nice to have a plan.
Jim and I still have a few lingering concerns about Zack’s body. What causes his ileostomy to have such high output? Why did he prolapse so many times? Even though his testing shows his small bowel works correctly, are we really sure about this? Hopefully his body will give us time to feel better about how his small bowel functions.
Some other good things that came out of our visit to Cincinnati this time include coming off of most of Zack’s medication. He no longer requires Elavil to help with stomach pain, he no longer needs to take any Dulcolax (laxative) and we are weaning him off of Prednisone. Of course, we did have to switch from a laxative to Immodium. I have written about the irony of this before….
Because Zack has been doing so well, we were able to get home in time for Easter. Luckily, Cincinnati Children’s has a Concierge Service and they helped us mail Drew his Easter goodies in time for the holiday. Sadly, we did not have a thing planned for our own dinner or Easter baskets, but we managed to pull it together and have a pretty awesome day.
It is just too hard to get genuine smiles early in the morning…even at Easter.
Our new plan is to enjoy Zack feeling well for as long as possible. It is amazing to see how much better he feels now that his colon is not being used. We do not miss hearing his belly sloshing every time he moves. Zack says his stomach feels better already and based on his energy level we believe him. He says that his pain level before his surgery was ten, but now it is zero. We are still working on mastering the pain scale, but you get the idea. His belly is still “puffy”, but we were told it will take months for his colon to shrink back down to a normal size.
If all goes well, our guy will be participating in the Special Olympics for his school in a few weeks. He also has great plans for taking tennis lessons, swimming lessons and learning karate this summer. Nothing would make me happier than to see these dreams realized. Thank you guys for your prayers and well wishes. Fingers crossed that this ileostomy will be the one that actually works!