In my blog life, no news is good news – medically. Zack has had a bit of testing since November and all of it resulted in good news. I like that. Let me catch you up…
In December, Zachary had a big ultrasound appointment in radiology to check for a hernia and to check on some other internal organs. Happily, his kidneys, bladder, spleen, and liver all looked great. No hernia was found – also great news. The radiologist did say that he could see that Zack’s abdominal wall had some areas of thining which could account for the bulging we see next to his incision line when he is obstructing. But it is not a hernia that needs to be surgically repaired. Yay!
Zack also had another procedure in radiology later that month. Zack has a surgeon-made mucous fistula at the bottom of his scar, above his pubic bone. This mucous fistula is tiny. It is about the same size as the point on a pen. His surgeon created it back in 2015 to help give us access to his colon. His GI doctor and the radiologist were not sure if it would be possible to access it at all and wanted to try it in the fluoroscopy suite. Zack told the doctors that he did not need any pain medicine because he was a warrior. Big brother Jake was there to help distract Zack and he didn’t even need to do anything. Zack allowed them to put a little, tiny, NICU catheter into the fistula. Then the radiologist pushed some contrast to see if it would go in and it did! Zack’s GI told the radiologist that he only wanted a small amount of contrast placed since Z usually retains things in his colon.
There was much rejoicing in the room that we had access AND that Zack was amazingly calm. He did not seem to be in any pain, he was happy as we left, and he was asking for food – all good things. About an hour later, all of that changed. Zack started moaning in pain. When we got home, he wanted me to “vent his stomach” to make the pain stop. He couldn’t understand why that would not help his colon feel better. Soon after, he began crying in pain and asking me to make the pain stop. He continued to be in distress until he put himself in bed at 4:00 and fell asleep. When Z falls asleep, something is definitely not right. We woke him up to see Santa come down our street on a fire truck. But Jim had to carry him outside, and he went right back to bed. I am happy to report that he felt much better in the morning. However, the last time we tried to access his colon, the same thing happened – intense pain and crying. Not sure what that is about and haven’t really unpacked that with his doctor yet.
Zack quickly put that behind him as his brothers and sister-in-law were here for Christmas, and there was much fun to be had. We crammed a lot into a few days and it lifted all of our spirits.
This past week, Zack attended Outdoor School. Where we live, all 6th graders go to camp for a week to learn about our environment, the Chesapeake Bay watershed, native plants and animals, and lots of other things. It is a week that almost all children look forward to, and it is lots of fun. Unfortunately, Zack was unable to spend the night. The nursing staff was more than prepared to take care of Zack overnight. However, because of all the care he needs overnight and the fact that the kids sleep in cabins, the staff was concerned that his care would be disruptive to the other campers. Jim and I completely agreed with this assessment. I was able to drop Zack off each morning at 8:00 AM and pick him up at 9:00 PM. Zack was very sad that he was not able to spend the night. The principal worked hard to turn a no into a win for Zack (she’s amazing). She allowed him to be assigned a cabin with the other boys, bring his camping gear, and have cabin time during the day. The only thing he did not do was sleep in the cabin.
The past two school years were incredibly hard for Zack. His doctors told his elementary school that he just needed some wins. Outdoor school worked hard to give him a win and I am so thankful. His middle school has also worked hard to give Zack some wins this year. Zack has been happy to go to school, and he is excited about learning again. There are no words to explain how Jim and I feel about that, but an amazing sense of relief would be close.
Zack also just turned 13! He is quick to tell us that he is a teenager now and needs more sleep. If only that were true…… We look forward to consistently sleeping through the night one day, but that day has not yet arrived. He had a family pizza party this past weekend, and the celebration will continue as he and Jim tackle the AT trail for a few days on a Penrod traditional father/son 13th birthday trip – dates to be determined. They will just go overnight so that Zack can get all of his medicine, but it will be fun anyway.
Today we went to Children’s National Medical Center in Washington, D.C. to meet with a new GI team. I did NOT want to go – for a number of reasons. However, Boston recommended some testing that Walter Reed is not able to do, and our insurance denied our request to have it done in Boston – don’t get me started on insurance right now. Happily, our insurance will still cover Z’s surgeon in Boston or I would have cried many tears.
When we arrived, Zack was given a different doctor than we had expected, but this turned out to be a blessing. The doctor he saw was young, energetic, and excited to learn about Zack’s case. He asked a lot of questions and was extremely thorough. We do not have any dates for the testing or admission yet. We expect it will take a few months because the doctor wants to review all of Zack’s biopsies, scans, labs, surgical notes… basically everything, before proceeding so that he has a good understanding of everything that has been done and explored to date. He told us that he had written a paper on eosinophilic ganglionitis recently. That amazed us because there is very little literature on eosinophilic ganglionitits. Nobody really knows if Z has this or not. It is something that still needs to be studied further, but we were impressed that this guy knew more than just the name of it. He feels similarly to Boston, that the ACTG-2 finding makes chronic intestinal pseudo-obstruction the likely diagnosis, but he wants to rule out eosinophilic ganglionitis or see if it is a co-diagnosis. This is what Zack’s GI at Walter Reed has been working towards as well, so we were happy to hear that.
Wow are my fingers tired! I apologize for not having a smooth transition for this closing. Words are escaping me at the moment. That will teach me to wait so long between updates. It was pretty nice not to be on the computer, though. I’ll update as we get more information. Until then, Happy New Year!
Hug your babies!