2 days ago Sam was taken down to the radiology department and had his 22 cm GJ taken out and replaced with a 30cm GJ, to see if the vomitting could be lessened by a machinery change. Well I can't exaggerate how good the change has been - last night he was on normal full feeds of 35 ml/hr enterally and he didn't vomit once.....seriously I think he may have only had a handful of times in his life this has happened. Today he has not vomitted once....that's like never happened! His life must feel so different now - now horrible taste in his mouth, no yucky residue on his teeth and not having that awful feeling of vomitting. Below is a photo of him in action in hospital yesterday.
We will welcome back sleep of which we've been deprived of for the best part of 2 years..... I know it's only been 36 hours but we are truly amazed at the difference in Sam and what it will mean for us. Sam has always been easy going and happy, but hopefully now we can continue increasing his milk feeds and reducing TPN - that would be awesome with long term consequences for his liver.
So we were thrilled to leave hospital at 11 this morning and then totally humbled as we arrived back to 2 lovely meals sitting waiting for us from very kind people in our church, .... as always we are thankful for the village that is working to help us raise our boy. It meant I could be with the girls this afternoon and not be distracted by thinking about meal prep, so instead we went out for a couple of hours together to the local mall and they spent some of their pocket money whilst hanging with Mum (they are still young enough to not mind being with me) and we came home to a scrumptious chicken casserole.
Thanks for your ongoing love, support and prayers for us...it does bring good cheer to our little hearts.