One Week Later….

In my last post, I signed off quickly because Zack was headed to the OR for his colonoscopy, biopsies, and manometry catheter placement. The rest of his hospitalization was not fun for him (was any of it fun?). Zack required a lot more mom and dad love and encouragement than he typically does in the hospital. By the time he was discharged on Friday and we made it home, it was time for dinner and we all just crashed.

Let me take you back to last week. Zack woke up in the PACU and he was NOT amused. He was in pain and needed to have a bit of Fentanyl to help calm him down. Even then, he just kept crying about how much his belly hurt. While that is very typical for Zack and his colon, it is still hard to know he is hurting and there is little we can do to help him.

We spoke with his doctor about Zack’s procedure, and he told us that it was pretty tough. He was unable to get his scope past Zack’s descending colon because it was filled with white globules that were like cement. Even with irrigation, he could not get them to move. He said his colon did not look normal (shocker), and there were many areas that bled very easily that he did not expect to see. Those are not his exact words, but my version. He said that given that Zack’s colon had been resting for a number of years now, he would have expected it to look much healthier. Nothing really surprises us when it comes to Zack’s intestines anymore.

After the PACU controlled his pain, he made it back up to the floor. This particular testing protocol called for Zack to eat and drink soon after he returned to his room. Yeah. When your belly hurts, eating is not high on your fun things to do list. We finally got him to drink some juice, and the team called it good. Luckily, he was able to finally settle with Tylenol and didn’t need any other pain meds. Zack told me that he did not want me to take any more pictures of his face because his belly was hurting and he felt crabby. I believed him.


We will follow up with Zack’s doctor on October 5 to get the results of his testing. I have no idea what to expect. To my untrained eyes, it looked like there were some contractions happening in his colon. Unofficially, I heard that there was some motility, but ineffective and not through all areas. I guess we will find out soon.

There are two other things that I want to document here so that I do not forget them. First, when the OR weighed Zack the first day, he had lost almost 4 pounds since his last weight check on August 10th – and he was wearing shoes in the OR. He was weighed at 29.3 kg (64.46 lbs) in the OR and had been 31.3 kg (68.86 lbs) at his well-visit. That was very disappointing because we are working so hard to get Zack to 70 pounds! Second, as I type this a week after discharge, Zack still has some impressive bruising from 2 of his 4 IV placements. I’m surprised how badly he bruised. Since I look back on this blog to help me get procedures, surgeries, and hospitalizations in order, I appreciate you indulging me this extra paragraph.

While all of that was happening, we were also juggling getting our pup, Captain Awesome, to different doctors in both Maryland and Virginia. Cap’s red blood cell count, platelets, and liver values were very concerning. He had an abdominal ultrasound, liver aspirates, and tons of blood work. All of the vets were shocked that they did not see cancer….in our newly turned 3 Golden Retriever. Even though they did not find cancer, we were being prepared to lose our pup. Zack knew Cap was sick, but not how bad things were.

I am happy to report that Cap’s blood work is starting to improve. His platelets are still very out-of-whack, so we have to be gentle with him and try not to let him get hurt. His ears have gone from yellow to almost pinkish again and he is eating. You know a Golden is sick when they do not want to eat. He still has a way to go before we feel confident in his recovery, but we have hope!!

To make life more interesting, three days after we got home, Zack started 7th grade -virtually. Thanks, COVID. Zack loves routine, so getting back into the school groove has been good for him. In true Dawn fashion, I finished painting the new school room/office and putting furniture back into it the night before school started. To be fair, August was a crazy month. I’m glad I did it at all!


I will leave you with some pictures of Zack enjoying his new hobby. One of our good friends introduced Z to fishing during quarantine and he loves it. It is the perfect hobby for this time of isolation. He appears to be quite the fisherman. He has caught (and released) at least one fish each time he has been fishing. Jim and I are just grateful that he wants to be outside.

Until next time….

Hug your babies!

~ Dawn

Manometry Testing Take 5

Almost exactly one year ago, Jim and I took Zack to Boston’s Center for Advanced Intestinal Rehabilitation in hopes of learning some new ways to manage Zack’s intestines. We left with a game plan that included a number of recommended tests. Together with his doctors, we have spent the last year getting those tests completed, except for one – manometry testing. Sadly, Walter Reed no longer performs the test, and our insurance would not allow us to have it done in Boston. And that is how we find ourselves here today at Children’s National Medical Center in Washington, D.C. in the middle of Zack’s 5th round of manometry testing.

I am going to be completely honest. I did not want to put Zack through this again. We have done manometry testing at two hospitals with four different results. We know his intestines are wonky. Why put Zack through such an invasive test again? However, people who are way more knowledgeable about intestines explained that getting another snapshot/data point would be helpful in determining a path forward. With much grumbling and complaining on my part, I finally worked through my dislike of this plan and got myself on board because I needed to be 100 percent in or Zack would sense my fear, and I would never be able to sell the plan to him.

Children’s performs the testing a bit differently. Instead of an overnight admission with scopes and catheter placement on day one, and testing and discharge on day two, this admission last four days. On day one, Zack headed to the OR for endoscopy, biopsies, and manometry catheter placement – both antroduodenal and stomal. This means that woke up with a tube placed in his nose, down into his stomach, and into the first part of his small bowel. He also had another tube threaded through his stoma into his small bowel as well. These tubes have sensors placed several centimeters apart that record the strength and coordination of intestinal contractions.

Zack is a very active child. He never sits still. However, having a tube in his nose and one in his stoma changes Zack. He sits extremely still and is pretty sad. The nose tube stayed in place nicely for the duration of the testing and the doctors were able to get some good data. The stoma catheter was more problematic. There is no way to secure it to the internal intestine or to the outside of his body because of his ostomy bag. The doctors were able to rig his bag to accomodate the tube, but it was pretty messy. I would paint you a picture, but there are some things that are just better left unsaid. Let me just say that it was a very long night for Zack, the nursing staff, the resident, and the laundry room.

Children’s testing protocol has antroduodenal and stomal testing lasting 24 hours, so day two was spent finishing the first round of the test. The plan was to finish the test and head back to the OR for a colonoscopy, biopsies, and placement of the colonic manometry sensors. However, there was miscommunication between the teams and anesthesia was not onboard with taking him back to the OR. That meant that Zack had a free evening to investigate the floor, head to the outdoor Healing Garden, and relax. He was not thrilled to learn that he was limited to a clear liquid diet, but he managed to eat 4 packages of jello and a bowl of chicken broth before being NPO again.

One of the things we have been very impressed by this admission is the Child Life Program. Their intake process flagged Zack. I’m sure it was mostly because he is so cute… but also because of the level of his medical anxiety. They coordinated with a special program they have in place that involved the neuropsychology department coming up with a plan to alert everyone involved in Zack’s care about how best to help him through this admission. Overall, it has been a wonderful help. The Child Life staff has advocated for Zack and alerted the staff to his unique needs. They have intervened when Zack needed a moment to process next steps, they have asked for Barney the Golden Retriever therapy dog to come sit with Zack when he was upset and when they felt he just needed a friend, and they have made sure the teams know to talk about medical issues with us outside of Zack’s room. I wish all hospitals had such strong Child Life programs… .


Transport is here to take Zack to the OR. Signing off for now….

Hug your babies!

~ Dawn