It been a scary week for Charlie…
On April 30th we received a phone call from Charlie’s Gastro team they were concerned about his blood results from Monday as they were showing sings of unexplained deterioration in his renal function/acute kidney injury. Unsure as to what could be causing this, we were advised to pack a bag for a few days and head to hospital as it was highly likely Charlie would be stopping in for monitoring.
We arrived on the assessment unit at QMC for teatime, the plan was to take more bloods and monitor his fluid in & out put over the next few days.
While in hospital we take our home bags of TPN in with us to use on their pumps. That is when I noticed, on the second morning we were there Charlie had far less TPN fluid left in his bag than we did when we was at home..
I explained this to Charlie's team who said it could be possible the cause for his deteriorating renal function/Acute Kidney injury is all down to his home pump not providing him his full intake of TPN over the 15hrs hours.
The team advised I bring in the pump and test it with a bag of hospital Fluids to assess weather it is the main reason or not! The test was done and unbelievably Charlie was receiving around +200ml short of his daily nutrition.
I was so upset as i couldn’t believe how I had not noticed the difference in the remaining fluid left in his bag of TPN. Charlie had not been showing any signs of dehydration or oedema and his weight remained the same. His team reassure me that this may have been an issue that built up overtime. Its still extremely hard not to punish yourself when you have to be the main career for your child and from now on, I’m going to monitor what is left in the bag daily to make sure he doesn’t go through this again. For all that he has been through he does not need Kidney failure on top!
Prior to going home I was advised to replace all of our home pumps and to bring them in to the hospital to run through with IV Fluids to ensure they were safe enough to go home.. Thankfully with the new pumps we had no problems.
Charlie’s team believed the best plan of action was to increase his TPN back up to 18hrs and run alongside the TPN additional IV Fluids in the hope this would help his kidneys to function better and fully recover. Over the week Charlie had his bloods taken pre and post his TPN to monitor his renal function. Thankfully over time they were improving and we were discharged home on the 7th May. Charlie remained on 18 hrs on discharge with a plan to reduce gradually back down to 15 over the next few weeks. Praying this is just a blip and not the start of ongoing issues..
Thank you for your ongoing support following our journey
Sending love and well wishes
The Radford Family X