This is another catch-up blog. I really will try harder to keep this up to date. It has been another hectic few weeks with, yet another, stay in hospital. William has been very well since coming home from hospital after his illeosomy and we had all been enjoying time together as a family and doing every day, normal things. Of course, life still revolved around TPN and William's other medical and physical needs but we were home and together.
We needed to try and see if William could cope with the octreotide, the drug that could reduce the huge abount of fluid he loses through his bowel. We also needed to challenge his bowel again to tolerate something going in. Hope and Ellie were staying at their Dad's for a week in the Spring break so I requested that William went to hospital to do all that while they were away so we didn't have to worry about where they would go. So, on the second Monday of the school holidays, William and I went into out Chelsea Pad with strict instructions to the doctors that they could experiment all they liked but we were to be home by Thursday afternoon. We tried a tiny test dose of the octreotide. The first dose gave him a localised skin reaction but the second made him red and mottled all over. So, that option went out ot the window! As we had a couple more days, the doctors decided to challenge his gut with 5 mls per hour of diorylyte. This was swiftly stopped as it increased the output of fluid through his bowel and was making him dehydrated. With this, the doctors realised that we were not going to be able to increase this into a substantial amount of feed to reduce TPN and have him fed, in part, through the gut This feeding pattern would have best helped protect his liver from the TPN but even a tiny bit of something offers some protection for the liver so the next plan was to try 5 mls of neocate (special baby milk with all constitutes in their elemental form, i.e. as if already broken down by the gut) four times a day. This would offer better protection than diorylyte. William's response to this was described by the doctor as 'spectacular!' He lost 3.2 litres from his gut and ended the day we were due to go home dehydrated, unresponsive and with 3 gut bugs living in his line as a result of everything becoming stirred up by the response of the gut to the feed. Far from going home, William instead spent the night keeping the on call doctors busy checking on his responsiveness and prescribing antibiotics and fluids. By the next day, Williams red cell count, neutrophil (a white cell) and platelet counts had dropped and he needed a blood transfusion. We stayed over the weekend and came home to continue IV antibiotics. The girls missed stayed on at their Dad's a few days longer than planned and missed the start of term. So, all in all, a bit of a disaster really!!! We have clinic on May 20th and will discuss where we go next. William's consultant is keen for him to go to Birmingham sooner rather than later for transplant assessment. Although he is not sick enough to go on the list as yet she hopes this will enable us all to see if this is where he is heading and if it is what we want for him. His liver and spleen are now enlarged and, although his liver is still functioning well, his spleen is not doing all it should in fighting infections and producing/regulating blood cells.
We were in the 'Mail on Sunday' 'You' magazine today in an article about 'Wellchild' the charity that organised our garden makeover. I didn't know the article was in today so couldn't tell anyone but it is a good article so check if anyone has it before recycling day.
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