G-Tube

Wow! I am horribly behind on this updating thing. One of these days I'll get around to a Christmas post complete with pictures, but for now I'll update (especially for those out-of-towners) on Zach's surgery.

Zach had surgery on January 18th to place his g-tube (for feeding). We were called the day before and notified that his surgery was scheduled for 5:30 pm and he couldn't have anything to drink after 2:30 pm. We were super stressed about him needing to go 3 hours without anything to drink right in the middle of naptime. When we went in for his endoscopy we notified them he needed fluid prior to the procedure, which they went out of their way to get an IV placed, but then never gave him the fluid...oh well! This time they told us that we could bring him in as early as we want and they would note his chart to start an IV and give him a bolus of fluid. Fortunately they called us at 2:30 to let us know some of the other surgeries before his were cancelled and wanted to know how early we could get there. We got there by about 3:10 pm and they had him back to the OR by about 3:30. It worked out really well because he didn't have to go quite as long without fluids and it'll happened so fast rather than sitting in the waiting room for several hours.

He came out of surgery and had a hard time recovering. He hated the nasal cannula that was giving him oxygen and he wanted a drink so bad. They wouldn't allow him to have anything to drink until the next morning. Around 11 that evening I talked them into giving him sips and chips (which was probably more of a tease than a benefit) and we kept him on morphine all night long to help him sleep. The next morning they let him have apple juice and started getting back to his normal self. By 4 that afternoon his dad showed up after work and our little man was his happy self again. He was so excited to see daddy. He spend one more night so they could do a test feeding and then we went home Friday afternoon. We took a lot of walks in the halls in the wagon looking at all the animal pictures and making animal sounds. He loved to point out the turtles on the floor that looked like Karolyn (our tortoise).

Zach has done really well since his surgery. He doesn't pull on it and I'm not worried about him intentionally pulling it out (knock on wood). He seems to tolerate his feeds really well (he still vomits every night but that's normal for him). We give him continous feedings through the night and then we let him eat and drink whatever he wants during the day. No more pressure to drink all that high calorie milk and we can use the tube for his meds. He's tolerated his tube so well and I'm glad kids can bounce back so easily. We've all seemed to adapt and many things have become a lot less stressful. The last week or so has been a little difficult because his site has started to leak gastric juices which are extremely acidic. Everyday he has drainage around his site and it's red and sore. I'm hoping we can get that to heal because right now it's hurts his poor stomach to even be touched.

About a month after his tube was placed we had a follow up appointment with his nephrologist and things are going so well. He weighed the same as he did on surgery day (however on surgery day he was wearing clothes and a wet diaper, and at the office he was naked). He's back on the growth charts at 24 lbs 3 oz (5th percentile) and 31.5 inches long (3rd percentile). Also his labs show that he is more nourished and receiving more protein. I'm so glad things are going so well and we're slowly working on re-introducing solids. His nephrologist said he needs to be able to eat entirely by mouth and continue gaining weight. He estimates he'll have his tube for a couple years. For now it's a huge blessing.