Zack’s Update — Surgery #1

I apologize.¬† I had great plans.¬† I would bring my laptop to the hospital and write all about Zack’s surgery and keep you all updated….and then life happened. ¬†I also wanted to be witty and fun in my posts, but this time I’ll just be relaying information. ¬†It’s really all I can do right now.

It all started out as we expected.¬† Zack was admitted to Bethesda Naval Hospital or Walter Reed National Military Medical Center as it is now called.¬† We did the clean out.¬† Over 3.7 liters of GoLightly later and nothing.¬† For over 9 hours.¬† Seriously.¬† I had been second guessing myself about the surgery.¬† Yes, he needed it.¬† It really was our only option.¬†Still, that nagging anxiety about sending your baby into surgery kept me wanting another option.¬† Z holding 3.7 liters of that stuff inside his body was confirmation that there was indeed no other way.¬†I’ll spare you all the messy details, but some came out overnight.¬† The rest (we thought) was cleaned out during surgery.¬† If you are a parent getting ready to go through this surgery and want all the details, I’ll be happy to share.¬† Just leave me a message….

The morning of surgery was a flurry of activity and waiting.  We saw the surgery residents, the surgeon, the ostomy nurse, the pediatric residents and doctor.  Zack got in his ride and off we went to the OR.

Since Z had an IV placed during the cleanout phase, the anesthesiologist gave him some versed and got him loopy before taking him away.¬† Oh my heart.¬† That was incredibly hard.¬† Knowing that this surgery was important, but also that it was going to mean changing Zack’s body, I had such a flood of emotions and just wanted the day to be done already.¬† Why does time seem to stand still in times like that?

Soon the surgeon came to get us.¬† The surgery went well.¬† Zack’s colon was decompressed first.¬† The surgery was able to be done laparoscopically.¬† When everything was done, the surgeon decided he thought the stoma looked a little “tight”, so he did some reconstruction to make it just right.¬† He felt good about it and we felt enormous relief that surgery was over.

Once Z got back to his room, he slept most of the day.  He had pain meds on board and a local at the surgery site and seemed to feel great.

That night, he started having a lot of pain.  We were up most of the night.  We found out that the orders for the pain meds were not relayed correctly and that Z was only getting 1/2 the dose of morphine he was supposed to and instead of IV Tylenol and Zofran, they were giving it to him orally.  That lead to vomiting.  It was a long night.

On Tuesday morning our surgeon arrived and was not impressed by the events of the night.  He assured us that would not happen again and we knew he meant it and has been true to his word.  All meds are under control and all staff have been great working with Zack.  Zachary had visitors on Tuesday and his cousin, Ronnie, came and played Minecraft with Z.  Z even sat in a chair for a time.  We were so happy that things were looking so good.

About 9 p.m. all that changed. ¬†Zachary began to vomit again and was in a lot of pain. ¬†His pain medication was not touching it and his stomach was distending and he was not urinating. ¬†Our nurse was wonderful. ¬†She really took charge and got the Surgeon of the Day up here, x-rays taken, etc. ¬†In the end, we had to wait for the morning for our surgeon to hear that Zachary had a bowel obstruction and ileus, complications from surgery. ¬†We’ve been told that developing an ileus is not uncommon. ¬†Ileus¬†is a type of bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small intestines. ¬†Narcotics can also slow the return of intestinal function and morphine is a narcotic.

On Wednesday the doctors decided it was time to figure out if the obstruction at the surgery site was due to swelling or if the actual procedure might need to be redone. ¬†They also decided that they needed to place an NG tube so that they could suction Zack’s stomach. ¬†His stomach was very distended causing lots of pain and they wanted to decompress it and remove fluid. ¬†Further, they wanted to put in a PICC Line¬†to start Z on TPN or Total Parental Nutrition. ¬†These are nutrients placed into the blood stream to help people who are not able to eat. ¬†He had not eaten since Saturday and was vomiting and losing fluid through the NG tube. ¬†Unfortunately, the Pediatric Sedation Unit was completely booked and he had to wait until Thursday for the PICC Line¬†placement. ¬†The good news on Wednesday was that they were able to switch Zack’s pain medicine from Morphine to Toradol. ¬†It is a drug used to reduce moderate to severe pain, but you can only receive 6 doses total and then they would have to switch drugs.

Wednesday night was much of the same with pain, vomiting, low urine output. ¬†On this night, however, a pediatric resident was reading his file and realized that he was super dehydrated. ¬†In addition, when he stood up to try and go to the bathroom a stream of blood came out of his ostomy. ¬†People really started moving then….more xrays, more surgeon of the day activity, more everything. ¬†In the middle of the night when people start hurrying around your child, it isn’t the greatest feeling. ¬†I had been staying overnight while Jim went home to be with Jake. ¬†Each night seemed to be one crisis after another. ¬†Our surgeon had said that he expected that night to be a good one, so I gave him some ribbing about that in the morning. ¬†Zack and I were now running on about 10 hours of sleep total since Sunday.

Thursday morning Zack was able to have the PICC Line¬†placed. ¬†I had never even heard of a PICC Line before. ¬†Basically, it is a central line, IV, that is thread from the upper arm to just above his heart. ¬†Zack’s has two “heads” which allows him to receive both fluids and nutrition. ¬†To place it, we had to go the¬†Pediatric Sedation Unit where he was again under anesthesia. ¬†Jim and I were allowed to stay and watch and it was really amazing. ¬†A little lady who looked a bit like Edna Mode from The Incredibles¬†came in and took control. ¬†She watched Zack’s veins through ultrasound to pick the best one, and moved with great precision and speed and got that puppy in quickly.

Just before ¬†the PICC Line was placed, Zack’s surgeon was able to insert a tube into his stoma and retrieve over a liter of fluid from his intestines. ¬†Besides the relief of getting that fluid out of his body, the surgeon was also happy that the stoma, though not working, was made properly and felt confident that no other surgery would be necessary. The NG tube produced and ostomy produced about 1.5 liters of fluid and some other bodily fluids added a bit more for about 3 liters that day. ¬†That’s a lot of stuff coming out of one little body! ¬†While he was still under anesthesia, we also gave him a good scrubbing. ¬†Being clean does a body good. ¬†He also got some balloons from his Sunday School teacher.

Friday brought more news of the intestines just not cooperating. ¬†X-ray showed distended small bowel loops with lots of air. ¬†The NG tube stuck to Zack’s stomach wall and had to be flushed and repositioned. ¬†The doctor switched Zack to Dilaudid for pain control and over the course of the day decided to do 2 hour doses to help keep ahead of the pain. ¬†That night Zack began breathing funny and lifting his arms as if he couldn’t breathe. ¬†Pulse/oxygen levels were good, so everyone decided that it was the abdominal distention leaving Zack feeling breathless. ¬†In addition, the output from the NG tube was going down and it was decided the tube had attached itself against the side of his stomach. ¬†Several x-rays and repositioning led to a better drainage flow. ¬†All the repositioning led to vomiting. ¬†The kid can’t catch a break.

That leads us to today. ¬†Today Zack was pretty tired. ¬†The surgeon explained that his small bowel was now very distended. ¬†If you can remember way back to the beginning of this blog, we had the ileostomy because his large intestine was so distended, but his small bowel was fine. ¬†The ostomy is open, but not draining because nothing is moving in his small intestine. ¬†Why is the question. ¬†The doctors say it is a waiting game now. ¬†Because Zack also has motility issues, it is really hard to say when the intestines will begin to work again. ¬†They cautioned us to be ready to be in the hospital for a long time. They said one patient ended up being there for 40 days. ¬† I’m pretty sure my heart dropped with that statement.

I’ve tried to include a lot of details for those who may be having this surgery soon. ¬†Not everyone gets these complications or they wouldn’t be complications. ¬†Zack’s body has always reacted a bit different than the usual child to medical procedures, so this may just be a Zack thing.

My husband and I are exhausted. ¬†I came home for the first time to sleep tonight. ¬†It feels strange without my boy. ¬†He’s in good hands with his daddy though, so I’m off to try and get some sleep.