Little Miss Bunches

3rd fill up of expanders

Thanks to the memory supressant effects of Phoebe's sedative last week, we walked into the Children's Outpatients department this week and Phoebe exclaimed "Oh Wow!" at all the pictures, paintings and toys to play with. We have decided therefore, that Wednesday's are now Phoebe's Ground Hog Day.
After some discussion with the medical staff we agreed to try Phoebe with the same sedative as last week. Within 20 minutes Phoebe had turned into the She Devil again. This was before the surgeon had even made it down from a break in the operating room. It was very distressing once again to watch Phoebe and I had to go and have a 'moment' from the treatment room to compose myself and check on Freddie who was being pushed around by one of the nurses. The surgeon decided to go ahead with the fill up despite Phoebe's apparent rage as a) she couldn't get more upset b) she would not remember any of this. The surgeon managed 10ml in one cheek and 5ml in the other.
Phoebe's forehead is another matter. The morning of the planned fill up I realised that a corner of the forehead expander had popped through the skin. So the forehead was not filled up at all. Infact we have to keep the (now open) wound covered with antibiotic cream and a plaster. And just 'keep an eye on it'. It was hard to talk to the surgeon with Phoebe screaming but our understanding is that we might have to go back to surgery and resolve the forehead issue. Watch this space.

2nd fill up of expanders

Well today we learnt the lesson... "If it ain't broke don't fix it".
today's fill up was planned to take place in Paediatric Outpatients, as opposed to being on the children's wards. We were asked to give Phoebe some Paracetomol before we arrived. As Phoebe was on a very high cloud following her sedation last week, the Dr's decided to give her a slightly reduced sedative and no pain medication (just the paracetomol I gave her at home) this week. So she drank the sedative very nicely and we lay on a bed with her playing "go to sleep' games. It was about 5-10 minutes later when you could tell her pupils were dilated and she was battling to focus. Despite this Sally (the plastic Surgeon) entered the room and Phoebe instantly became nervous. NB: the sedation Phoebe has is supposed to act as a memory suppressant so she shouldn't remember Sally doing anything to her, at least that's the idea. Phoebe sat on Seal's knee and read a book. I was very brave and managed to stay in the room and watch - yeah for me!. Phoebe was definitely very aware of her surroundings but just a little bit woozy. Sally filled one cheek with 10mls very easily. During the fill up of the other cheek, Phoebe reacted slightly. Sally took this to be discomfort and so only added 5ml. Phoebe's forehead expander has hit a bit of a problem. It has a fold along it. The result is that at the top of her forehead she has two little 'horns' which are the corners of this fold. These corners have been very red and after last weeks top up, they became black and ulcerated - not good. Whilst they do not seem to have given Phoebe any problems, these 'horns' are not desired. So this week Sally withdrew 10ml and it is hoped that over the next week the ulcers will heal and we can resume top ups again next week.
So the top-up was over and it was just a case of waiting for this new milder sedative to wear off and then go home - easy.
Well, no. Phoebe went mad about 10 minutes after the fill up. I am not sure what was going on really but for an hour she went crazy; she kicked, she screamed, she hit, she sobbed. Nothing we did placated her, food, toys, cuddles, walking, leaving her alone. Everything we did she just cried almost hysterically. As we were in a Paediatric department there were more than a few Paediatricians in their rooms listening to Phoebe. The general consensus was that the sedative had had an adverse effect on her mood. I do not believe that she was in pain, but as Phoebe does not have verbal skill to express herself I might have got this wrong. Well whatever it was, it was extremely upsetting and distressing to watch and very tiring for Phoebe to be that agitated for so long. We were both powerless to do anything for Phoebe. After last week, we had lowered our guard and were confident we knew what was going to happen and how Phoebe was going to be. Clearly the change in sedative amount and pain relief had not worked this week. Next week we are reverting to full sedation and pain relief (which has it's own sedative effect too apparently).
After 2 hours in Paediatric outpatients we came home all of us exhausted. I fed Phoebe warm Wheetabix (with sugar!) and she got down and bounced around the kitchen like nothing had happened. In fact for the rest of the day she was fine and seems to have no pain and no recollection of what happened (hurrah for something). Admittedly Phoebe did sleep for 2 hours for her lunchtime sleep but after crying that long who wouldn't fall into a long exhausted sleep.
I can't say Phoebe looks dramatically different at the moment (others might disagree). Partly because the expanders are on each cheek it mean that Phoebe's face shape is still symmetrical, albeit a bit wider The tape bandages are off and the scars, where the expanders were inserted, are very fine and have heeled brilliantly. One cheeks still shows the signs of deep bruising but Phoebe is handling this process brilliantly. Long may it continue.