Shay has been pulled from pillar to post the last couple of weeks. After numerous hospital appointments and being told to come back in three months, I insisted on Shay having a Nasogastric tube. At last, I made myself very clear on what I wanted for Shay and expected something done. The stress of Shay not eating was finally taking it's toll on all of us. Over the last 3 years his weight has gone from the 91st centile to just below the 9th centile. The NG has been placed with the understanding that it is a short term measure and that Shay in a few weeks will have a G-Tube placed. It always amazes me how having a child with one of the rarest diseases in the world, you have to hit rock bottom before anyone will listen. We do come across some doctors who don't really know what to do or are unsure of what decision needs to be made. When you see a child who refuses to eat and not just something that happens over a month, it is common sense that intervention is needed.
We were told Shay would start to gag as the tube was placed and to see him so focused when it was being done was painful for me to see. He was an absoulte star throughout the whole procedure. He didn't gag, move or complain!!
Since the placement we haven't had no sickness and he has gone from 50ml to 600ml of feed a day. Shay has also gained weight, in 8 days he has put on a whole kg which he has failed to even do over a whole year.
We are back to see the consultant in early June about the G-tube placement. Shay has had his stomach x-rayed to ensure he is suitable for the tube. Next week, Shay is back at Great Ormond Street to have an MRI done on his brain.
