Wills is still kind of stable but took a teeny step back today from 20 mls to 10 mls per hour diorylte. His gut stopped working again during the night with only the tinyist of dribble coming through his stoma. At lunch time, he was wretching violently. He can't be sick as he has had a Nissen's Fundoplication - an operation to stop stuff refluxing up from his stomach. I use a syringe on his gastrostomy when it is clear he is trying to be sick and got 180 mls back. This was where all the diorylte had gone where it had mixed with all the medicine that he had been given during the day and a bit of bile. No wonder he was feeling sick. The feed was turned down and Wills was much more comfortable. It is horrible to see him with tummy pains and feeling sick as his bowel has its ups and downs. There is no way around this but it is yukky and unpleasant for him.
Just in the last hour or so a little gas and stuff has passed through the stoma. You easily get pleased with small things on this transplant recovery road. At least his gut is getting there, all be it very slowly. I know there are a few more snakes and ladders to come yet. We are having to take William's feeding very very slowly at the moment and, for the mean time, he is on full TPN which will be increased today to give him some more calories. This is not the direction we are hoping to go in but everyone is confident we will turn around again...I would finish this sentence with 'soon' but I am not going to say it - let's just leave it that we will get there eventually! I have been looking for a perfect song to put some photos to for a Christmas video card. I am beginning to think it will have to be 'Patience'!
William asked me today who gave him his new tummy. I said the surgeon to which he replied 'No, Mr S put it in for me. I said who gave it to me!' I wasn't expecting that so soon. He is a clever little thing and has been lying there quietly listening to all kinds of conversations. For now, I will wait until he asks again, seek advice and start thinking about the best response for him at his age.
Just in the last hour or so a little gas and stuff has passed through the stoma. You easily get pleased with small things on this transplant recovery road. At least his gut is getting there, all be it very slowly. I know there are a few more snakes and ladders to come yet. We are having to take William's feeding very very slowly at the moment and, for the mean time, he is on full TPN which will be increased today to give him some more calories. This is not the direction we are hoping to go in but everyone is confident we will turn around again...I would finish this sentence with 'soon' but I am not going to say it - let's just leave it that we will get there eventually! I have been looking for a perfect song to put some photos to for a Christmas video card. I am beginning to think it will have to be 'Patience'!
William asked me today who gave him his new tummy. I said the surgeon to which he replied 'No, Mr S put it in for me. I said who gave it to me!' I wasn't expecting that so soon. He is a clever little thing and has been lying there quietly listening to all kinds of conversations. For now, I will wait until he asks again, seek advice and start thinking about the best response for him at his age.