In that time we have had 4 visits to the RCH, 3 of them for fill ups. 40ml on the first, 100ml on the second and 120ml just 2 days ago.
Combined with 80ml (done in theatre) brings us to 300ml and equates to this:
As I've said before I was dreading it this time around but he has been a real inspiration.
We have standard a booking at the hospital so our weekly routine is spot on and consists of me waking him up, having breaky, then applying angel (EMLA - Numbs the skin) cream to his port, placing a piece of glad wrap over it then bandaging it in place. I also put on his special hat to cover everything and prevent curious fingers then we head off for the hospital, its about a 90 minute drive give or take, time is usually spent chatting, listening to music or playing games on my iphone.
NOt every morning has been smooth sailing, try waking anyone 2 hours earlier than normal on a cold morning and they would be grumpy.
I try to make it as positive as possible, talking about how cool his balloon is and how it's going to get bigger then in "a few weeks" be gone forever. He has shown a little anxiety towards seeing the doc but usually forgets it when we hop in the car and I hand him the magical iphone. The ballon its self is much larger than his last expander and softer (well there is more space) he slept in my arms the otehr night and I just stroked it for an hour.
So far the angel cream has worked well, he hasn't flinched or felt pain when the needle has gone into the port, the doc usually injects saline until C shows discomfort or the skin tightens. On the second occasion we were in and out in 15 minutes. This weeks visit was an hour and a half so it is hit and miss i'm afraid. I cannot praise the staff enough, they are always friendly and happy to see him and also lend a hand hen he needs entertaining during the fill up.
As i've mentioned in my last tissue expander post there are apparently 5 other children going trough tissue expansion at the moment (normal its just one). So far I have seen a little boy with what i'm guessing is a bathing trunk nevus (covers the back) with an expander across his shoulders. I've also seen a little girl with a cape nevus (covers the back and head) with an expander on top of her head and another on her cheek.
Its amazing how resilient children are. mHaving a water balloon on top of his head hasn't slowed C one bit, he still swims, runs & jumps just like before, its his poor parents who cringe every time he trips or bumps his head.
Hoping it continues going as well as it has been.
Until Next time..........