Our SCBU stay involved trying to get Nate to feed a little bit from a bottle. We came home and worked on this even more and on week 6 the ng tube came out and only went back in when he was ill.
Time went on and Nate grew well but long and skinny. He drank high calorie milk but if he didn't have good "burpies" as we called it he would struggle sats wise and vomit. On one hospital stay we found we could vent his wind with an ng tube and have a happier boy. The ng also allowed milk top ups which enabled him to be weaned from daytime oxygen ( during this process weight is monitored closely. The ng meant we could get extra calories into him).
Time went on and solid feeding went 2 steps forward and 3 steps back on a regular basis. We continued with the ng as a back up. During times of illness- even a cold or ear ache, Nate would refuse all food and we needed to use the ng even more.
Over time Nate became even less tolerant of the ng tube. He sucked down even more air adding to the windy issue. He pulled the tube out frequently sometimes 5 times in a day. Finally we were listened too that feeding would be a long term issue for Nate and we needed a long term solution. We had a failed endoscopic peg insertion in January but had a successful lap assisted part open gastrostomy on Friday. In addition to this Nate has even been holding his spoon to feed himself!
Hopefully the start of good things feeding wise.
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