After much thought and prayer and many doctors recommendations I have decided to go ahead and get a feeding tube (PEG) placed in Nathaniel. I have struggled and worried for 21 moths about his eating and his failure to gain adequate weight. My little guys is 21 months and only weighs 14 pounds. In fact, he has weighed 14 pounds for months. The surgery was scheduled for March 16th then an estimated 7 days of hospitalization to get used to eating.
Thank God the surgery was a success. It took about 45 minutes to get the PEG in place and then about an hour or more for Nathaniel to wake up. When he first woke up he was extremely upset. He was given pain medication and then he went back to sleep. We then were transported to room 3135 where he was to recover. The first few days were especially hard. We were away from our family and the only visitors allowed upstairs because of the flu and cold season were parents. JJ had a volleyball tournament and he left the day after surgery and didn't return until Sunday night. I was on my own doing 24 hour care in the hospital while my sweet mom in law took care of Olivia and Kaleb at home. What a blessing for me not to have to worry about my other two. I was able to focus my 100% attention and time to Nathaniel's care.
Day 2 Nathaniel caught pneumonia and was having a hard time recovering. Poor little guy had to have labs drawn every six hours. We started a slow and steady rate of feeding on day 2. Once the feeding began his body got shocked from the calories and nutrition and thus got re-feeding syndrome. This is common for children who are malnurished. His phosphorus levels dropped dangerously low. This took a few days to get used to but once his body was balanced and became adjusted he perked up and was himself again.
Day 3 We discovered a new fun way to entertain ourselves while feeding- a little red car that Nathaniel quickly became way too attached to. In fact, we clocked in 25 laps around the floor in the red car while he received his feeds.
Day 4 we finally were able to take Nathaniel downstairs in the red car to the lobby where he was able to visit with Nana, Olivia and Kaleb. Nathaniel was thrilled to see his siblings. I was so happy to see the kids together again. 50 laps clocked in on the red car.
The rest of the days were pretty routine - feedings, bloodwork, doctors visits, downstairs visiting with our family and many more laps around the 3rd floor.
Day 6 he was discharged. Nathaniel was so happy not to get poked anymore and to be going home.
Overall, the surgery and hospital experience was not so bad. It was a great time for me to bond deeply with Nathaniel and give him my 100% attention. There was no housework to do, no kids to take to school or pick up. All my time was just devoted to him. We sang all his favorite songs about 100 times, played cars, cuddled, slept together, and just loved each other.
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