Sometimes you just have to push through the setbacks for in order to remain positive!
Just when things have been going so well for our little guy, we were given some disappointing news today during his 3 monthly Gastroenterology review.
At his last review Charlie was given the go ahead to reduce his TPN hours "this is his specialist nutrition given intravenously, bypassing the usual process of eating and digestion, due to his short gut he is unable to absorb all the fluid and nutrients requires to sustain a balanced diet." from 16hrs to 14hrs per day. For us life changed instantly for the better we were able to be more flexible in planning our days and evening out. It also meant that we were able to be more flexible around planning tea, medication, blended diet, bath time, story time, overnight PEG feed and TPN connection all before bedtime for the boys.
Unfortunately, Charlies weekly bloods since the reduction have shown his kidneys are not coping well with the change, therefore the decision has been made to increase his hours back to 16hrs. To be honest it has knocked me back as life was definitely more manageable and less stressful on the 14hrs. For his future we can only hope that by making some changes to his diet at some point in the future he will be able to try 14hrs again.
For now, I’m focusing on the positives from today's clinic, Charlie's stool samples show that he is however absorbing some nutrients from the food I have been giving him and that his ultra-short gut is managing well on A blended diet. He continues to grow and is managing to maintain on the 50th centile of the growth chart which is good and means Charlie is on average with other children of his age. Charlies daily fluid allowance has also been increased from 150mls -250mls per day, now I know Charlie will be happy about this as the poor guy loves water. Overall his team are pleased with his progress and can’t believe how well he looks considering his ultra-short gut and ongoing complications we have with his Gastrostomy button.
Thank you for following our journey
Much Love From
The Radford Family x