MRI Madness

Today has been a day off the week of mass medical appointments. However, it was just as busy as I caught up with work and housework. William had his MRI brain scan yesterday and what a palava that was! His jej tube was removed on Tuesday and I had already highlighted the fact that he would be unable to take oral sedation and, even if the tube was there, it is unlikely he would absorb it anyway. His consultant had planned to use sedation that can be absorbed through the mouth. However, no-one else knew of the plan! Everyone was nervous as his notes include a recent sleep study showing desaturations. This, together with the fact no-one had given the form of sedation I was describing, led the nurse on the day ward and the radiographer to conclude that William was not compatable with MRI at our local hospital. I was so frustrated as his tube had been removed specially and putting it back will involve at least an hour, nearer 2, of unpleasantness and discomfort for him. The radiographer said he was going to refuse the procedure and write to the consultant. At this point, I insisted that he speak to him to see if the stuation could be resolved. His consultant said to the nurse he didn't know where the concern about desats came from, I overheard her tell him on the phone this was from a letter he had written to William's gastroenterologist and read the quote to him. This was more than mildly amusing! In the end, they agreed to do it if the consultant gave the sedation and remained with William throughout. So...he came and gave the sedation. William became a little wobbly but no sleep...so he gave more...still awake...and more...yep, you guessed! Eventually we decided that the sedation was not working (surprise surpise!) He probably absorbed some through the mouth but did swallow some so it looks like not enough was absorbed to actually make him sleep, despite 3 doses! He was fighting the sleepiness he did feel. So, I had to get into a gown and go with him into the scanner. This was most uncomfortable and claustrophobic as there was barely space for him, let alone me lying beside him with my head on his chest and my arms cramped up with one stroking his face and the other up against the edge of the machine. We whiled away the time singing to immitate the noises it made. Surfice to say, the images were not great and the whole thing may have to be repeated...under IV sedation at Chelsea and Westminster of GOSH!

Since the scan William has leaked copious (even more than usual) amounts of aspirate from his stomach - so much so he has had to remain on free drainage to cope with it. He was really uncomfortable all afternoon yesterday. His gastro nurse specialist wonders if GOSH will try and give him a little feed into his gastrostomy to see what happens. It seems nothing much has changed and they will soon see what happens...William gives it all back again...with interest! His nurse also suggested that William may yet go to Birmingham for transplant assessment if GOSH agree this is the only solution to his intestinal failure. If so, they may well conclude that he is too complicated for transplant but at least he would get assessed individually and the pros and cons weighted for him, rather than a generalised decision. We will know more about the next stage after we have been to GOSH the week after next.