Monday we checked into the hospital for a few days to check Zack’s colonic motility and to see if the doctors could find any abnormal things inside his colon. We have done the motility test twice before but received different results each time. Now that Zack’s ileostomy is close to prolapsing again, it is obvious that an ileostomy is not the best option for him. It is time to come up with a better solution. We need to know if there is any chance his colon would work if reconnected.
Zack was really happy on Monday. It is rare for him to be admitted while feeling well. He loves visiting with the nurses and staff on the pediatric ward at our hospital and he was is high spirits giving hugs and talking to all of his “friends”.
He lost that happy feeling late Monday night when several attempts to start his IV failed. When he woke up on Tuesday, the reality of anesthesia clouded his happy countenance. Things went downhill behavior wise from there. Zack’s incentive (bribe) for good behavior was the Lego City Dirt Bike Transporter. He was looking forward to building it after his procedure and had grand plans for it. Sadly, Angry Badger made an appearance. His Lego set is now in Daddy’s closet until the next procedure when he will have the chance to earn it once again. Bad behavior just cannot be rewarded no matter how sad that little face looks. Stand strong parents!
Jim and I are sad that Zack is so out of control anticipating anesthesia. We worked a little bit with our Child Life specialist today with some medical puppets and dolls. Zack was able to place an IV in the puppet’s arm and talk a little about how much he does not like them. One of our favorite nurses of all time gave us some suggestions from things he had been studying regarding children who have had many medical procedures and become fearful. We are hopeful we will find something that helps calm his fears because they are getting worse.
Zack headed off for his colonoscopy and colonic catheter placement around noon. Zack’s doctor said the colonoscopy was good with nothing abnormal found. The catheter or tube contained a lot of sensors that measured the pressure or contractions in his colon at rest and with meals and medical stimulation. It was clipped (somehow) to the beginning of his large intestine and then brought out of his body through his bottom and taped to his leg. The procedure did not take long and he was back in the PACU after about an hour and a half. It took a long time for him to wake up from the anesthesia, but there were no complications this time and everything went according to plan. I like that. Zack was not able to eat or drink for the rest of the day and had to stay in bed. That was not a problem as he did not really want to move.
Zack, Jim and one of our nurses with matching tattoos. Zack also put one on his belly as a surprise for his doctor to find.
This morning, the colonic manometry started when Zack woke up. Zack’s doctor said this gave them a baseline measurement. After about thirty minutes, he was able to eat pancakes and drink! He downed an entire 32 ounce G2 Gatorade in a matter of minutes and was a happy, happy child. Once he finished eating, the machine continued recording until his doctor returned to give him a medication through the tube to stimulate his intestinal nerves. This medication worked! We were able to see propagating waves on the monitor. Propagating waves are a good thing. In January, there were none, zero, nada.
Now the never ending questions remain. First, why does he have decent motility when he has an ileostomy and his colon is at rest? Did his septic symptoms skew the test last time? Does his colon stop working properly when it contains stool? Was the colon so dilated that the sensors couldn’t sense anything? Second, what are the least invasive ways to get answers? One idea is to give Zack a cecostomy. This would allow us to flush Zack’s colon from above, but can only work if we can figure out why nothing comes out of his bottom. Can we try re-feeding his colon (it’s a real thing…adding ostomy output into cecostomy to see how colon reacts to stool) before reconnecting him again? You get the idea. Lots of questions. Unfortunately, we may not have much time to figure this out.
Today, however, we are happy to be home. Zack was discharged at 12:30 which gave us plenty of time to play. It was a beautiful, sunny day. Zack was thrilled to be outside even if all of the kids in the neighborhood were gone.
Daddy getting the IV tape off.
Happy to be home!
Frisbee with Dad.
Almost caught it!
Even had time for a bike ride!
We are looking forward to enjoying the last four days of summer vacation. We are hoping to have a little pool time, a barbecue with friends and lots of play time before then. We are pretty excited that we have good news to report. Hoping to continue that trend for a while!
Tonight we are excited to sleep in our own beds, no machines, no noises, no lights. It is very exciting!