Surgery Update!!!!

I was hoping to update our blog soon after Trey's surgery but the little man has been keeping us quite busy. So much has happened in the last 4 days I will try and give the shortest version.

Trey was admitted to Mary Bridge Children's Hospital on Tuesday. We were fortunate to have a single room which was quite spacious. He had an IV placed and labs drawn which was successful with one poke:) I was able to hold Trey while they put him to sleep. I think that was comforting for all of us. The PICU doctor leading the sedation said OK he will be asleep in about 20 seconds and sure enough he was out. We couldn't help but giggle through the tears while Trey totally looked drunk as the process took place.

The procedure took about 1 hour to place the g-tube. Everything went well. Once Trey was in recovery I was quite taken back when looking at the tube for the first time. I have seen dozens before but it is just so different when it's your own child. Underneath the actual tube, two button like objects are in place that are holding the sutures which are keeping his stomach attached to his abdominal wall. I will cut those on Tuesday once the new tract where the g-tube is has had time to become more stable.

Trey was very painful that first night. Curtis and I didn't get much sleep. Poor little man has never really experienced pain before so I just don't think he knew how to cope with things. They kept his stomach empty the first night to let things settle. We started him slowly on pedialyte and that following morning (Wed) we worked up to the Elecare formula he normally takes.

That Wed. Trey was still having quite a bit of pain issues. The main goal for the day was getting him to tolerate his continuous feeds at his normal calorie intake and controlling his pain. Another sleepless night for all of us.

We were planning to go home Thursday as long as little man was able to poop but my worst nightmare as a nurse and especially as a mom took place. That morning Trey was very fussy and painful. I was rocking Trey and he was arching his back and crying so I decided to get up and place him in his crib to try and calm him safely there. Trey had so many different wires attached to him and as I was trying lift the very upset little boy into the crib his tube feeding line got caught on the crib bed and his g-tube that was placed popped out. Of course panic set in as I realized what had just happened. I screamed for Curtis to call the nurse as I covered this now open hole with gauze. I just sat there in disbelief like I can't believe I just did that. I cried and cried because of the guilt I felt for causing pain to my own child.

The nurses quickly placed a temporary tube in the hole until they spoke with the doctor to figure out what step to take next. In the future I will have to change the tube myself every couple of months but the problem with it coming out so soon is that it was a freshly placed surgical hole and all the tissue were so new. The concern was when you go to replace it you have to be very careful that the tube doesn't slip into the wrong spot since the new tract to his stomach hasn't fully formed.

So Trey once again had to go down and be put under sedation to replace the tube. I still am replaying the event over and over in my head. I am trying to forgive myself for the accident that took place but you can imagine how hard that is. Trey had a difficult time waking up after this procedure. He was literally inconsolable. It was very difficult for us all to watch. He did settle once the IV pain meds were given. So we ended up staying another night to make sure his pain was controlled and he was able to poop.

We ended up leaving late Friday morning. Trey was a new man once we were heading home. He was totally done with the hospital by the 4th day.

Even though it was a rough couple days there were many blessings that we experienced. Trey had amazing nurses during our stay. I felt like God hand picked everyone of them for our family. Trey's GI doctor was so wonderful and supportive through the whole process. I feel so lucky to have him looking after our son. And it was so great to have Curtis with us through this whole experience. He kept me grounded and made me smile when things were tough.

So the plan is to slowly work Trey up to 3 bolus feeds a day and he will be continuously fed at night. But for the meantime he is being fed around the clock so that means that one of us is constantly following behind him with his tube feeding backpack. I never knew truly how active the little boy was until now. So if anyone would like to sign up for a shift??? :) We will start reintroducing food on Monday but we are encouraged by how much he is already wanting to drink by mouth.

We are though slightly concerned that infection already might be setting in around the g-tube. He is at higher risk since his new surgical site was exposed when the tube came out. So we will be keeping a close eye on it.

Thank you to everyone for all your support and love these last few days. I will post some new pictures once we get settled back in Pullman. Hopefully good news to follow soon. Keeping our fingers crossed and continued prayers going:)