You may be asking yourself, “What happened to Zack?” I thought he was doing so well. He was doing well. He had more color, he had spunk, he was smiling, but it was all because he had a tube in his intestines diverting fluid from his obstruction. His happiness was dependent on the tube. And then it fell out.
How does a tube fall out of your body? Well, Zack’s tube was sutured to the wafer of his ostomy bag and then secured with steri-strips. It was quite the invention and it worked really well for 48 hours. Eventually, the steri-strips just couldn’t hold the tube and it literally fell out of his abdomen while he sat playing a game on the computer. His surgeon decided to see what would happen if we just left it out. As we feared, Zack’s intestines did not drain. He began to need to be drained again and he began to be uncomfortable again.
On Monday, Zack’s surgeon began saying that our plan was changing. No longer was there talk of us going home. On Monday night at 10:30 p.m. as he was draining Zack’s stoma, he said Z would have another surgery within the week to fix the problem. Tuesday morning rounds came and he told me that Z had been added to his schedule and would be having surgery in a few hours. My head started spinning. That wasn’t next week! He felt that Z’s intestines were no longer tolerating the draining well. He did not feel comfortable sending us home to drain them when they were so irritated as there was a chance we could puncture his bowel. Most importantly, Z’s condition without the tube was not going to get better.
The procedure was explained. I signed consent forms, called Jim and our family and then sat down and tried to make sense of what I had just heard. The surgeon said that having surgery 2 weeks out from your original surgery is really bad timing, but that it could not be helped. He wanted to do a laparoscopic procedure, but felt it would end up being an open abdominal procedure. He told me that he would open Zack, see if he could isolate the kink and fix it without cutting his intestines. He also told me that this was probably not possible. He also needed to redo Zack’s ostomy and he would probably now have two separate stomas instead of one stoma. We met with anesthesia and off we went.
Let me tell you, waiting for your child to come out of surgery is torture. How are they doing? Is everything going according to plan? So many questions. Time feels as though it has slowed down and almost stopped. It was supposed to be a 3 hour procedure. At 4 1/2 hours the doctor finally came to get us.
The surgery was an open abdomen surgery. 15 cm of Zack’s bowels were taken out because they were just too dilated to save. The new end was attached to a new stoma on the left side of Z’s abdomen. This new stoma is the ileostomy. The “old” stoma was fixed so that there is now only one hole that leads to the large intestines. The large intestines are now completely cut off from the small intestines. The surgery scar is right down the center of his abdomen around his belly button and a little bit down. It was a pretty involved surgery. When the surgeon came to get us, he told us that Zack was going to be spending the night in the Pediatric ICU because he needed a blood transfusion. He had lost the normal amount of blood for the procedure, but his hematocrit was low to begin with and he was pretty pale. Turns out he hasn’t needed that yet…..
Once in the PICU we realized that Zack was in a LOT of pain. Pain medicines were started. He got Dilaudid, Ketamine, Tylenol, Zofran, more Dilaudid, and Fentanyl. The boy was drugged and nothing was touching his pain. Our night was miserable. Seriously. He did sleep for an hour between 2-3, but the rest of the time was in major pain. I did not like that.
The pain continued this morning and the pain management team suggested doing an epidural. Jim and I signed the consent forms, but when anesthesia came in and said we would have to do it under general because the “stuff” draining from his NG tube put him at risk for aspirating, we reconsidered. We consulted with the team from anesthesia, the PICU doctors and our surgeon. In the end, we decided that we just couldn’t put Z under general again. His body doesn’t react to things in a typical way, our hospital stay has not been typical and we didn’t want to subject him to the risks of another procedure so soon.
The new plan was/is for pain control using Toradol, Ketamine, Zofran, Dilaudid, Tylenol, and Fentanyl as well as battelfield acupuncture. I had never heard of using acupuncture in the hospital before, but it was offered as an option and it sounded like a great idea as the other options were not working well. I found this article for those of you who want to know a little more:
Here are two acupuncture photos for you:
Sorry this one is blurry. You can see the one in his forehead and some on his ears. He slept through the whole thing.
Shortly after making our decision, Zachary fell asleep. We don’t know if the drug dosage was finally large enough or if he was just totally exhausted, but he slept for 3 hours! We were thrilled because he needed a reprieve from the pain. During that time a glorious thing happened…..his ostomy started to work! I did a little happy dance and we texted our GI, took pictures of the output for him (no worries, they will NOT be on the blog), and told the nurses – they clapped. It’s a big deal. It works and is a huge step toward going home.
Zachary is still in the Pediatric ICU tonight. He has tubes and wires and drains everywhere. Here is a picture of his IV pole tonight:
It’s a double-decker rack. As crazy as this seems to me, the nurses have told us that some people have two racks filled with medicine. I hope I never have to see that! In addition to all the pain meds, Zachary has an antibiotic called Zosyn, TPN with Lipids, and fluids hanging. I get a headache trying to figure it all out. I’m glad it isn’t my job! To get all of that into his body, the nurses added another IV with two “ports” to his right hand. Here’s a photo of that:Th
As you can tell, he’s been through a lot these past 17 days. We are beginning to see signs that things are headed in the right direction. Our surgeon has cautioned us that Zack’s body doesn’t work like one might expect, so we can’t say for sure when we can come home. We have one more night in the PICU, at least. The drugs he is on now can not be taken to the regular ward, so his pain will have to be controlled by other drugs first.
Once back on the ward, we have to start disconnecting tubes and introducing fluids again before he can eat. In addition, Zachary’s white blood cell count has elevated. It could just be from the stress of the surgery or it could indicate a beginning infection. Since he had a bowel reconstruction, it is considered a “dirty” surgery and at more of a risk for infection. He’s already on a big antibiotic in hopes of squashing this, but will be monitored closely for the first 5 days after surgery.
There you have it. I’ve typed as much as I can. My eyes are stinging. Jim and I would like to thank you all for your prayers, meals, gifts, calls, texts, visits, etc. Please continue to pray for Zack as he works to get better. We can’t wait to go home.
For now, I’ll leave you with a few fun photos of the days before this surgery:
Zack and Laura Lee the Golden Retriever therapy dog. She looks a bit like our dog, Rugby, and was very patient as Zack patted her head over and over. I’ll remember these dogs as one of my favorite things about being here.
Finally, a photo that makes me smile. Zack’s teachers came to the hospital to visit and to bring him his graduation cap and certificate from preschool. We’ve got a lot of healing to do because we’ve got a big year coming up! We can’t wait to see you all at home soon!