2 out 1 in.

I have to say Phoebe breezed through her operation on Wednesday. It took 2.5 hours to take the forehead and right cheek expander out and 'advance the skin' (as it is known). An impressive amount of nevus was removed. The left cheek had a new expander put in but at the same time there was also enough new skin (created by the leaky expander) to excise a fair amount of nevus there too. So all was not lost there afterall.

As for Phoebe's face bothering her, she seemed oblivious to it. Phoebe never fails to amaze us. The Dr asked us to keep Phoebe quiet for 4-5 days post-op while things settled. However, unless they gave us a sedative, then that was going to be mission impossible. Phoebe seems to have more energy than usual. 30 hours after her op Phoebe was jumping on her little indoor trampoline and had so much energy we thought she would burst. We decided she had never fallen off in the last year, so it was safe to let her continue jumping. If, however, anything did happen and she fell off we agreed we would not tell the surgeon what she had been doing! Phoebe is sleeping right through the night and shows no (behavoural or otherwise) signs of the facial trauma she has been through.

This is only the first step on about a 5 step process. After 3 weeks respite we are back into weekly expansions of the right cheek. Am sure things will be easier this time with just one little expander to worry about. When the left expander is finally removed the idea (currently) is to put 1 or 2 expanders in Phoebe's neck to grow some skin for her nose, eyebrows and lower eye lids.

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.

6th fill up and an "oh dear'

Well this week was progressing quite nicely, friends down to stay and my birthday planned, so we really needed some excitement to keep us on our toes. I decided to take Phoebe to any indoor play area. I have kept her inside most of the time and outings involve the garden or sitting in a shopping trolley. Hardly the excitement a 1 year old craves. So there we were. Phoebe dived straight into the ball pit with two bigger boys (nice move) as soon as we got there. I figured if anything she did hurt too much then she would stop or let me know. She was happily palying and I sat and kept an eye on her while holding Freddie. I decided to go and watch Phoebe come down a slide she had already been down a few times that morning, a bit closer. For some reason she took my words of caution a bit too literally and as soon as she started down the slide she spun round and hung onto the top. Well the result was she took a fairly decent blow to the left expander in her cheek. There were a few tears but the promise of rice wheels and a drink soon placated her. As I sat there though I thought her cheek was not looking very 'inflated' anymore. I gave it a little prod and it did feel rather squishy. Dread slowly spread through me as I figured that she must have burst her cheek expander. I rang the Surgeon and was told to come in straight away that afternoon. The surgeon admitted that the expander was rather soft, but was not deflated completely, which she would have expected had the expander burst. We were due to go for a fill up (number 6) the next day and so we agreed to leave things as they were and assess the next morning. If the expander looked considerably deflated then an emergency op that afternoon would be required, as we would not want to loose any advancement of new skin that the expander had made so far.
That evening as I beat myself up over my stupidity at taking Phoebe to the blinking in-door play area I had a brian wave to look at some old pictures of Phoebe and the cheek expander. I have been trying my best to take weekly pictures and finally found a use for them. On anyalysis the left cheek has never really inflated to any great extent. Whilst Phoebe'e round cheek expander in her right cheek is definitely doing the job the left crescent shaped expander has always looked far less effective. So perhaps we didn't pop the expander earlier in the day. Perhaps the expander has a slow leak. Perhaps Phoebe bumping her cheek just brought it to our attention.
On fill up day the usual drama occurred, despite the local anesthetic on Phoebe's remote ports. Phoebe was not a happy camper at all during fill up but moments later had stopped crying - phew. The surgeon put 10mls in the left cheek expander (which had not shown any over night changes in size) and we agreed to wait a week and see if there was any noteable signs of deflation, as the expander looked very tight straight after inflation (as you would expect). The current plan is to do one more planned fill up next week and then in 2 weeks time remove the round expander and put it in place of the crescent shaped (left cheek) expander. I have quickly learnt that any plans are subject to rapid u-turns, so we will have to see.
Once again, watch this space.
P.S Thanks to Jane in Oz for sending me an e-mail! A big "Boooo" to the rest of you!

5th fill up

Due to child care issues, Seal took Phoebe to the hospital himself this week. The expanders were filled up without any sedation or local anesthetic cream. Judging by the shocked expression on both Seal and Phoebe's face when they reurned, I gather it was not the most pleasant of experiences. When I ran to greet the returning car, Phoebe was very quiet. She clung to me as I carried her to the house. When I sat down with her she gently put the palm of my hand against her (round) cheek and said "Owch". Whilst she did kick and scream during the fill up (Seal had to hold her very tightly) 3 seconds after it was all over she was laughing over a toy she had. The expanders only mananged 6ml's in each cheek this week. Seal does not think they filled the forehead expander but it looks bigger this week, so perhaps duing all the trauma he missed that particular fill up. The surgeon is very quick and does not faff around. I had given Phoebe coedine and paracetomol before her hospital visit, but she did not seem to require anything further during the rest of the day. Infact she is just the same old Phoebe, mad as a hatter, talking a language only she understands and providing her parents with half hourly warm fussy's for her cuteness.
Next week they are going to try anesthetic cream on the remote ports beforehand. I am going too. Sitting at home was worse then being there (but only majonally).

4th fill up, one step back

Sorry for the delay in posting our latest news. Seal took his laptop to the UK for 2.5 weeks, so I have been computer-less.
So where were we? Oh yes dodgey forehead expander. Phoebe's expander was pocking more and more through the skin. So just 2 days after the 3rd fill up, I was back getting Phoebe checked out with her surgeon. To resolve the problem the surgeon decided we had no choice but to operate. This meant a wait until the following Wednesday as Paediatric anesthetists are like hens teeth to find. Over the weekend we kept the hole covered with a bandage (it was horn shaped so quite hard to put a sticky plaster on it). Having not seen the expander before it went it, it was kind of weird to see it now poking through the skin. Phoebe took the whole thing in her stride and providing I didn't fuss around her face too much she was fine.
So there I found myself, not taking Phoebe in for her usual quick Wednesday fill up, but rather for a full general anesthetic. We were first on the operating list, which is always a bonus. Seal normally takes Phoebe through to theatre but as he was away in the UK, I had to step up to the mark. Phoebe was a dream. I realise this could all change in the future but she allowed her blood pressure to be taken, her temperature to be taken, an ID bracelet to be put on her ankle, and her oxygen levels to be checked all without a single objection. She then sat on my knee while they gave her the knock out gas. She just sat there while we played a game called "Lets breath deeply!" (not very original I know!). Off she went and out I went to pace the parents waiting room. Phoebe had 10 mls put in each cheek. The forehead expander was taken out (3 inch incision), cleaned up, straightened out and placed back in upside down. The hole was stitched. Easy. 1 hour later Phoebe was in recovery. However she came round a wee bit too soon and went mad (the same as she does on the sedatives). I struggled to hold onto her as she became more and more upset. She kicked, screamed, and went ridged. Up to this point I had been a very calm brave mummy, but was starting to loose it seeing her in such distress. Luckily a nice anesthetist was on hand and with the aid of a bit of white magic medicine in her hand, Phoebe was put back in the land of dancing elephants and they carefully brought her round for a 2nd time. This time she just very slowly woke up. She was cuddly but did not cry. She went back to the ward an hour later and by 1.30pm we were all back home. Phoebe's resilience never fails to amaze me.
Partly to give Phoebe a break (and partly because Seal was away) the last week we have not had any fill ups. Fill ups resume next week. This time no sedative. ArrrrHHH! We are very far behind with the forehead expansion now. So it remains to be seen if our surgeon just operates on the cheeks implants (once they are at maximum capacity) or whether we try and get the forehead expander to catch up and do all 3 procedures at the same time.
[NB: Please feel free to still email me. My In Box has never been so empty since I started this BLOG. Are you all still out there?]