This morning saw Sam strapped into the clear perspex cradle in radiology at Starship by 9am. Dye was injected into his stomach, and right away it was obvious that he was refluxing - stuff going back up his oesophagus. It also showed that it was exiting the stomach and going down the right path, but all the while doing multiple refluxes. Dye was then put into the J - jejunum, and it showed, as expected, that it was totally flowing down his intestine as expected. Sam was only on the table for all of about 10 mins as it was so very clear that these findings supported the clinical evidence: His enteral feeds into his jejunum are going the right way and he is putting on weight and growing at 50% feeds into his gut. He is vomiting bile and mucous (ie NOT milk), so this also confirms the enteral feeds are going the right route and the vomits are just stomach juices.
So with this clear evidence, the radiologist will now report back to gastro/surgical to see if indeed a fundoplication is what is needed or appropriate.
On Thursday we are back in for an ENT/anaethetist review. Sam is needing his tonsils and adenoids out, but as he is very complex the consultant and I am anxious to make sure that his post op care is carefully plotted before surgery, as unlike normal kids he won't be swigging on cool drinks or iceblocks afterwards to help. I had a 'funny' (read strange/frustrating/bizarre) conversation today with one of the administrators of one of the teams, as I got the vibe she thought I was a neurotic meddling mother. She made the comment that the team would have it all under control and I needed to leave it to them. I reminded her that I was talking to her as Sam's referral had been 'misplaced' and it took 3 phone calls to find out anyone that knew anything about it as nothing was showing on the computer system....hmmmm. Normally you see the anaethetist in pre-op to discuss anything, but the ENT consultant hasn't booked the surgery in yet, as she wants him reviewed first.... oh to try and do something that doesn't fit the system is a major deal as people kept telling me, 'normally we do it this way...', to which I replied, 'well Sam is not normal, which is why the consultant has requested it be done differently. Should he be normal he would have fitted in your neat little boxes, but he isn't, so he doesn't, so you need to work a solution that is best for the patient and not just to keep your boxes pretty!' I know I am never flavour of the month in Starship, but I take my role of protector of Sam very seriously! Just picture a lion with her cub.....roar!!! Honestly it can be so exhausting...... hopefully on Thursday we will see both the ENT consult and the anaethetist!