G-Tube/Feeding Tube

Since the time we had to add Simply Thick to Garak's formula, Garak lost a lot of weight.  In 3 weeks he lost just over a pound.  Since he was already low in weight, losing the pound dropped him off their chart from three percentile to "zero".  He was eating approx 20-24 ounces each day, once the Simply Thick was added that amount dropped down to 10-15 ounces.  It was so thick for him to suck through the bottle, he just could not get enough volume.  After 6 months of physicians inferring putting in a feeding tube we finally agreed.  It was probably the best thing for him.  At this time, we needed to figure out exactly what type of tube we wanted to Garak, we had the following two options.

1. G-Tube with a Nissen Fundoplication:  A gastric feeding tube (G-Tube) is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enternal nutrition.  In the Nissen Fundoplication, the Gastric Fundus (upper part of the stomach) is wrapped around the lower end of the esophagus and stitched in place.  This reinforces the closing function of the lower esophageal sphincter.  The nissen is to help people with severe reflux, it prohibits anything from go back up.  This will prohibit him from throwing up, burping and also having reflux (acid) go up.
2. GJ-Tube: A Gastrojejunostomy tube is similar to the G-Tube, but once in the stomach is then threaded into the jejunum (the jejunum is the middle section of the small intestine)

Both type of tubes are reversible, meaning we can take them out any time we feel like he doesn't need them. However, the Nissen Fundoplication is not reversible so we will never be able to undo this.  We opted to go with option 1.  Since we will continue to try to feed him portions by mouth, he would continue to have the bad reflux.  With doing option 1 we hope to eliminate his reflux to make him feel better.

On June 11th we went in to place the G-Tube and to have the Nissen done.  We were told we would be in the hospital for 2 days, but right after surgery he came out with an extremely high fever again and lasted four days.  Garak was also inconsolable, regardless of touching is hand/foot or rubbed his cheek or held him he would cry and cry.  The nurses continued to give him morphine thinking he was in extreme pain.  After 2 days they had to take him off morphine since they do not want infants on a hard drug for more than 48 hours.  Once the morphine got out of his system, his demeanor improved tremendously.  Since the only thing they changed was the morphine, the doctors believe he had a bad reaction to the morphine.  They say some side effects small children and infants can experience on morphine is severe pain throughout their entire body and hallucinations. On June 14th we left the hospital and returned home.  We were hoping with the feeding tube and the Nissen we would have a happy baby, but unfortunately that was not the case.  Garak seemed to get fussier each day and his fever came back.  

Since his bronchoscopy, his fever has remained very constant, the highest being at 104.6°.  Despite the meds we gave him, we had not been able to drop it less than 100°.