Surgery Update

Well my plans to update the blog after Trey's surgery totally went out the window. So here goes a long overdue progress report about our brave little boy...

My dad came and picked up the boys and I on Sept. 19th so we could head up to Tacoma. I swear the car looked like we were going to be moving in. But we kind of were (3 weeks in Tacoma).

As we were leading up to the surgery date Curtis and I were going round and round about the best way to prepare and talk about the surgery with Trey. I didn't know when to really bring up the subject because at times Trey can really fixate on certain things especially if he is worried. Poor guy gets this lovely trait from me. I gave the amazing Child Life a call at Mary Bridge for some ideas. We decided that the day before surgery we would do a pre-surgery tour. Trey was able to see where he would go before surgery, what his room might look like afterwards and some medical play with equipment. This went really well and I think was a good choice for Trey.

Trey desperately needed a haircut so we did that before the pre-surgery tour. No pictures from that adventure because Trey was having a total meltdown. But afterwards I thought he would enjoy going to Build a Bear and picking out a special friend to bring with him the next day.

 

Again no pictures with the end result here either because another meltdown went into effect. I think the anticipation for the next day events was setting in. But we did chose a bear with hospital scrubs so he could be ready for surgery and of course a WSU outfit for later.

Trey was the first surgery case for our surgeon that day which meant an early 6am check in time. Curtis had a huge recruit in town that weekend but flew in that morning to be with Trey before and when he went off to surgery. He was only able to stay a few hours but was able to return 2 days later and stayed with Trey and I for several days.

As you can imagine all of our nerves where on overdrive before they took Trey back to the OR. I think one of the HARDEST things Curtis and I both have ever had to do was kiss our little boy goodbye before we had to separate from him. We weren't able to go back to the OR and be with him while he was being put under anesthesia. Trey was given some medicine ahead of time to help him relax but unfortunately that didn't make the parting ways any less excruciating. I sure wish they dosed parents with medication beforehand too. My girlfriend and I were teasing about how the hospital should have a bar for parents to go wait in.

The surgery ended up taking around 3 hours to complete. Dr. Acierno said that the Nissen fundoplication went very well. She did have to revise a new g-tube for Mr. Trey. The one he currently had wasn't in the best position and that was probably the cause of all the excess granulation tissue. So Dr Acierno closed his old g-tube site after placing the new one. During surgery they also discovered that Trey had an epigastic hernia. So they repaired that while they were in there too.

Trey came out of surgery with 6 incisions on his little belly. He had to have a salem sump tube in his nose for several days which made life absolutely miserable for him. The tube was pretty large and very thick. Trey was so uncomfortable he refused to talk or really move his head while the tube stayed in.

The purpose of the dual flow tube was to prevent accumulation of gastric secretions and air in his stomach. Trey ended up developing a postoperative or paralytic ileus. This is a disruption of the normal movement in the GI tract. Basically there is an intestinal paralysis which prevents movement of food through the intestinal tract. So if they had tried to start Trey's tube feeding formula during this time it would have led to an intestinal blockage. An ileus is quite a common side effect after stomach surgery. But definitely a bummer because this meant the NG tube had stay in his nose quite a bit longer to help remove his stomach contents since his body wasn't doing it on its own.

We have known from the beginning that Trey has always been on his own timeline and that the ileus would resolve eventually which it did. This hiccup definitely was the main reason our stay ended up being 9 days long. Yes, that is right 9 DAYS!! Once the ileus started to clear his surgeon took the conservative route with restarting Trey on his tube feeding formula. Which in the long run is better for Trey. Trey had to tolerate a certain volume and calorie count in his formula in order for him to safely go home hydration wise. We had to stop advancing some of his tube feedings several times because he wasn't tolerating them.

So you can imagine after several days of being in the hospital, cabin fever set in. We did have a pretty decent view from our very small room.

We took several car rides around the unit.

There were many trips to the gift shop.

Trey had several surprises that were delivered to his room that brightened his day.

As expected Trey had several really difficult days. He was so done with the whole hospital life towards the end of our stay.

Every blood pressure check or listening to his stomach became quite the struggle. We tried to make things interesting. Like Trey opening his own store.

We found a cute little cash register in the playroom. His nurses or respiratory therapists would come by and purchase things with play money.

We had some fun visitors too.

Auntie Cat

Even though our stay was longer than expected I can't stress how much we appreciated the care we received. We had wonderful nurses that took such good care of us. The Child Life staff was so supportive during all of Trey's times where he was struggling with procedures or boredom. I wish I would have taken more pictures of the amazing staff who helped us through our stay.

Trey with nurse Julie

Trey with Miss Jade. Small world, she went to middle & high school with Curtis.

Our very special nurse Julie who admitted us to the floor after surgery &discharged us home.

I wish I had a better picture of Trey with his amazing surgeon, Dr. Acierno and Nurse practitioner, Maria.

As a parent your job is to protect your child from harm. It hurts your soul to see them ever feel any pain. I look at Trey and thank God for how resilient his spirit is. He is one brave and strong little boy. I can't express how much we love him. We are so excited for what the future holds for Mr. Trey.

P.S. If I can get my act together I plan to post how Trey is doing since we have been home, how much Noah has grown and what we have been up to before surgery.