Updated: Jul 5, 2019
Today was a fairly positive review for Charlieboy
Considering all that has happened over the past few months (see our previous blog posts). No big changes during clinic means a positive review to us..
Where do I start!
Due to the damaged caused to his Kidneys recently Charlie had to increase his TPN hours to 18hrs, we are happy he is now back down to 15hrs with positive blood results showing his kidney function has returned to normal.
The rest of Charlies blood results came back OK other than his phosphate levels remaining borderline. On discussing this with his team they explained Charlie may need more adding to his TPN or he may have an underlining vitamin D deficiency affecting the results, for now we aim to monitor this over the next two weeks and to retake his bloods pre and post TPN along with sending in pre and post TPN urine and stool samples to reassess his levels.
Typically, during the review clinics we explore Charlie’s Gastrostomy button, fluid/food intake, fluid losses, make changes to his milk or TPN scripts and increase medicine doses were needed. Today we discussed Charlies ongoing issues with his Gastrostomy Button, due to the amount it leaks daily he has had a number of site infections and requires multiple dressing changes throughout the day. This is frustrating for both Charlie and myself as the more we change it the more agitated and upset Charlie becomes.
On discussing this with Charlie's Stoma Nurses and his Paediatric Surgeon we believe the next step is surgery to try and make a stitch around the site to close the size of the hole.. If this fails the next step would mean surgery to re-site his G-Button. Re-siting the button would not be an easy solution due to the arrangement of Charlie's anatomy (Hetrotaxy/inversus of the Abdominal organs) and the damage caused by multiple operations causing many layers of scare tissue. Currently waiting for a date from his Surgeon, we will keep you updated. x
Moving on to Charlie’s appetite and the recent changes since attending Nursery daily. His consultant and dietitian were impressed with Charlie’s desire to eat when he is at nursery and assured me this is common for children to eat more when around other children. Due to the recent charity event arranged by a family friend we have finally been able to afford a new dinning table for us all to sit down and eat at together. Hopefully this will encourage Charlie to establish a routine in eating at home with us all.
I further explained due to the recent increase in TPN Fluids since the Acute Kidney damage Charlie is wet multiple times per night, over the 15hrs he has a total of 2240ml of TPN fluid. This is an incredible amount and is extremely difficult to night time train him to use the bathroom. His team explained that Charlie's Kidney function has now returned to healthy and it is possible to reduce some of the fluid to help with this. When ever we discuss TPN, fluids his hours during clinic it always triggers me to ask the same question! I’m not too sure why I ask the same question as the answer always remains the same..
“Can you see Charlie ever being reduce off TPN and or just on IV Fluids?”
I suppose I’m secretly hoping his consultant would turn around and say in a positive tone Yes soon! ( This is highly unlikely to happen) Charlies consultant has always been straight with us and is very careful in how she answers my question. We have have always been told Charlie will require TPN & IV nutrition for his entire life due the damage caused by NEC to his small bowel.
Concluding the review his consultant gave us hope, explaining Medical Science is always changing and at the moment QMC are waiting for NICE to give the go a head for a medical trial of Teduglutide.
His Consultant explained Charlie is strong candidate for the new drug trial Teduglutide (brand names Gattex in the US and Revestive in Europe)
After doing some research I've found that Teduglutide is a polypeptide and glucagon-like peptide-2 (GLP-2) analog that is used for the treatment of short bowel syndrome. It works by promoting mucosal growth and possibly restoring gastric emptying and secretion. A resent study showed that Teduglutide (GATTEX) increased the surface area in the remaining bowel and enhanced fluid absorption for people with SBS resulting in a reduction of Parenteral Nutrition. This all sounds positive however it also has risks, should Charlie be suitable for the trial we would have to explore both the positives and negatives and what would be the best for him.
Today we remain hopeful for his future, we will keep you all posted with the progress regarding the medical Trial, Thank you for continuing to following our journey
Sending love and well wishes to you all
The Radford Family X