Dear all
I am posting on behalf of a dear friend who recently found out that her little boy's medication is no longer controlling his heart condition and the new medication will need to be administered through a Hickman line. Long term he will most likely need a heart (and possibly lung transplant) but this medication will hopefully the need for this and therefore the number of transplants he may have to endure (a transplant of this sort apparently only lasts between 7-12 yrs).
My friend has coped with a huge deal to date, including her little boy having emergency heart surgery aged three weeks and then months in ITC plus various scares along the way. However this latest news has hit her hard as she is struggling to envisage how life is going to pan out after the procedure. She has lots of questions to ask and doesn't really know who to ask or where to turn. For example- how do you make sure an excitable 3 yr old that loves baths and creating mayhem, doesn't get the site of the line wet? Her little boy is very slight and the pack she has been told he will need to wear 24 hrs a day, rather big and bulky. How will he cope, will he sleep ok?? Again how do you again stop a little one wanting to play football with all his friends as he can no longer play contact sports? Essentially she is in a worried state and not one for asking for help and so I thought if there is any one out there that could offer support and reassurance and has had experience of something similar, could they please get in touch? Both her and her husband will be seeing nurses, consultants and a psychologist (to prepare their little boy mentally for what is happening) in the next couple of weeks but in the meantime it would really mean the world to both her and her husband to be in touch with parents or carers that have already trodden this path….
Thank you so much in advance xxx