7th fill up
Ok, won't go on about the trauma for Phoebe at being injected in her scalp three times over. I'll just say it does not get any easier. I did my usual brave mummy thing and took Freddie for a jaunt round the paediatric waiting room. 4 minutes later and Seal handed Phoebe over to me for a much needed mummy cuddle. As I stood there holding Phoebe and talking to the Surgeon, I felt a couple of drips on my arm. I asked Seal if Phoebe was bleeding onto my arm as I could feel something. But when everyone looked they said it was just water.
Arh ha! so there it was, the mystery solved.
We have finally found the reason for Phoebe's left cheek expander not expanding. It would appear that there is a leak (as we suspected) but not in the expander itself, but in the remote port. [My internet searches inform me that constantly injecting the remote port can result in the puncture holes leaking fluid). Previously the saline solution must have been leaking out under the skin (as the remote ports are buried under Phoebe's scalp). Today it was also then coming out through the hole made by the fill up needle.
NB: The surgeon had intended to withdraw all the saline from this (only partially inflated) expander, to see if the fluid volume corresponded with the medical records of what should be in there. However, as the whole process is very stressful for Phoebe and she has to be physically restrained, this was not an option anyone really wanted. Besides, we now had our answers via other evidence.
Future plans have not changed. We are not going to do anything sooner than next Wednesday (that's soon enough!) when Phoebe will go in and have her right cheek expander removed and the newly stretched 'pink' skin (Henry says yellow) brought up to replace the Nevus skin. The round expander from the right cheek will then be placed into the left cheek (to replace the punctured one). The forehead expander may also be removed too. The surgeon is very impressed with the skin advancement so far and thinks we could remove the part of Nevus on Phoebe's forhead all the way to the bridge of her nose.
All very exciting stuff and fantastic if it all works. However, we are more than aware that nothing in life is a given....mmm lets not get onto that subject, it leads to all sorts of silly things like worrying, sleepless nights, nail biting and copious amounts of chocolate consumption!
Will let you know how it all goes next week.
Arh ha! so there it was, the mystery solved.
We have finally found the reason for Phoebe's left cheek expander not expanding. It would appear that there is a leak (as we suspected) but not in the expander itself, but in the remote port. [My internet searches inform me that constantly injecting the remote port can result in the puncture holes leaking fluid). Previously the saline solution must have been leaking out under the skin (as the remote ports are buried under Phoebe's scalp). Today it was also then coming out through the hole made by the fill up needle.
NB: The surgeon had intended to withdraw all the saline from this (only partially inflated) expander, to see if the fluid volume corresponded with the medical records of what should be in there. However, as the whole process is very stressful for Phoebe and she has to be physically restrained, this was not an option anyone really wanted. Besides, we now had our answers via other evidence.
Future plans have not changed. We are not going to do anything sooner than next Wednesday (that's soon enough!) when Phoebe will go in and have her right cheek expander removed and the newly stretched 'pink' skin (Henry says yellow) brought up to replace the Nevus skin. The round expander from the right cheek will then be placed into the left cheek (to replace the punctured one). The forehead expander may also be removed too. The surgeon is very impressed with the skin advancement so far and thinks we could remove the part of Nevus on Phoebe's forhead all the way to the bridge of her nose.
All very exciting stuff and fantastic if it all works. However, we are more than aware that nothing in life is a given....mmm lets not get onto that subject, it leads to all sorts of silly things like worrying, sleepless nights, nail biting and copious amounts of chocolate consumption!
Will let you know how it all goes next week.
posted by Laura @ 3:21 AM
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