It has been a crazy few days for Zack. Yesterday was so busy and LONG that I did not have a chance to write an update. Now I have so much to say that I am pretty sure I’ll forget lots of important things and equally sure I’ll ramble. Forgive me, please.
Yesterday began bright and early with manometry testing. All was fine until the introduction of medication. After about an hour of testing, the manometry team put an antibiotic (erythromycin) into his IV which caused him to become flushed and feel sick. The medication is used to stimulate the small bowel. After another hour, Zack was allowed to eat pancakes and boy was he a happy child! He ate them so fast he gave himself a stomach ache, but I think he thought it was worth it.
The test continued for another hour or so and then the nurse added another medication to Zack’s IV. I do not remember the name of it, but Zack felt a lot of discomfort. We were told it was also for the small bowel. I am not sure if the first drug did not produce the waves they were looking for or if it is standard procedure. Zack has never had it before.
At long last it was time for the large intestine medication to be given. Zack’s colon did not respond how they had hoped, so they administered another dose. The medication causes lots of cramping. Zack was not a happy camper.
Sadly, during the administration of this last dose, Zachary’s stoma prolapsed. We knew it was only a matter of time, but really? At least we were in the hospital. The strange part was that Zack was on his back in bed. It was not as large as some of his other prolapses, but it would not reduce on its own. Seven hours later and several attempts at reducing it by the surgery Fellow, that pesky stoma finally went back in…..and then there was quite an outpouring of “stuff” from the stoma. Try not to think too much about that. Let’s just say that our nurse last night deserves a serious raise.
We also met with the GI team on service to discuss a number of tests they wanted to perform. They checked Zack for viruses, parasites, cystic fibrosis, malabsorption issues, nutritional status and a number of other blood work type things. Because some of the things they were testing for were potentially contagious, Zack was placed in isolation. That was fine yesterday when he felt bad, but today it was hard as Z felt pretty well and wanted to go to the playroom. It is the highlight of the hospital after all.
Because Zack has had “Angry Badger” issues, we met with a pediatric psychologist to discuss the situation. Her assessment was that Zack is suffering from medical trauma and could benefit from counseling. That was fun to hear, but not really surprising. One good thing that came out of her evaluation is that he is “a well adjusted child in all other areas” and only has anxiety regarding medical procedures. It was actually one of the best parts for me of being here. She gave us some great tips and we started trying to incorporate them right away.
At five o’clock this morning Zack needed to have labs drawn. His IV was not drawing back so he had to have a needle stick. Five o’clock in the morning and needles are usually a recipe for disaster, but I am happy to say that Zack held it together and did a great job. He was still scared, but was able to work through it with breathing and distraction and talking and a wee bit of crying. He did so well that his nurse gave him a Lego police truck. Talk about positive reinforcement! So positive in fact that he has been awake ever since….
Around lunch time, Zack’s GI here in Cincinnati came in to discuss the manometry results. We learned that Zack’s colon had no propogating waves at all until right above the anastomosis site. That means his colon does not function from the beginning of the large intestine until right above where he was reconnected. It begins to function above the anastomosis for a very little bit and then stops again until it reaches his rectum which functions well.
We also learned that his high output is a result of secretory diarrhea. I am not sure if I completely understand this yet, but for some reason his intestines secrete too much fluid. The doctors are trying to get a handle on this because it needs to be under control before we do anything else. That meant more blood work, a change in formula and antibiotics. Because his IV would not draw blood today a new IV had to be placed. Despite his great effort this morning, this new IV was just too much for him to handle today. The Vascular Access Team decided that since his IV still worked in his left arm they would leave it in place and put a new one in his right arm to be used for blood draws. They were wonderful in granting Zack’s request to leave his hands free for playing Wii. His tests for infectious things came back negative, so he was finally allowed to head back to the playroom. Behold the two IV wonder:
The last person we met with today was the dietician. We were thrilled to learn that Zack is now in the 30th percentile for weight! Everyone seemed pleased overall with his growth and would like to see him bulk up even more before his next surgery….and there will be more surgery.
We expect that Zack will be discharged tomorrow. Zack is counting on it, so I hope nothing else happens. The GI on service this week is not super comfortable with Zack leaving with his prolapsing issues, but Jim and I feel like we have done this for so long we can handle it. The only hesitation I have is how long it took Zack’s stoma to go back in last night, but if that were to happen here or in Maryland we would do the same things and home is always the better place to be.
We believe Zack will be having a colectomy (removing most of his colon) in the next few weeks. Zack’s surgeon is currently in China so we have not made any concrete decisions regarding which surgery to perform. We do know that she is planning to add Zack to her schedule the week after Thanksgiving. That is really soon!
Whew. I hope I covered everything. Time is almost up here in the playroom. That is my signal to get off this thing and say good night. Fingers crossed that we can bust out of here tomorrow.
Hug your babies!