Update....

Sorry it has been some time since I have written our BLOG on Phoebe, but I didn't want to write until I was comfortable writing about the latter part of the year.....

Phoebe's leg wound healed in about 9 weeks, and a weeks holiday in Fiji were she floated in the sea water everyday, seemed to do it the world of good. It is now a thick wide scar but the bright pink is fading weekly.

I often give Phoebe a full basting of cream post her bath or shower, it helps with the dry skin she sometimes has and gives me an opportunity to feel all her satelites. In June is felt a lump in one of the satelites on Phoebe's lower back. A registrar I pointed it out to just said we should keep an eye on it. A week later when I mentioned it to Sally (plastic surgeoen) she wanted it out ASAP - a slightly different opinion. Our Fijian holiday was days away so we agreed to removed it as soon as we returned, a week later.

The surgery went well. Sally took the lump and the entire satelite away (which was fairly large) , which meant Phoebe got a scar from one side of her back to the other. By 3pm she was crawling round the ward, was full of beans and we were kean to go home. Job done, back to family life. (Oh yeah right!). By 9pm Phoebe was in alot of discomfort, she had a very fitful nigths sleep and by the morning she was clearly still in pain. I kept the pain medication up but still she just lay on the sofa and would barely move. We thought she had perhaps over done things a bit yesterday as it was indeed a big scar she now had. She did not want to go to the loo as it meant bending at the waist putting strain on the stitches. By 4pm I tried to look at the wound and realised Phoebe was both hot and around the dressing was red. I knew this was not good. Within an hour the red had spread on it's way up her back and down her legs. By 6pm I knew she had to go back to hospital. Yet she couldn't bend to get into her car seat so how on earth was I to get her there? Ultimately we had to call an ambulance, and by 7.30pm we were on our way.

I am so thankful we live 7 minutes from our local hospital, that they have a chiildren's A&E department there, that they had Dr's who knew how to talk to a scared and poorly girl and put a drip in all without any further stress. I am thankful we have a brilliant public health system here.

To try and cut a long story short (not doing very well so far). Phoebe had a massive post-operative infection in the wound. She was put on a drip and given powerful antibiotics. The wound 'de-hissed' ie the stitches came un-done. She had to be operated upon again (making this operation number 18) to try and re-stitch the wound and drains put in, this was only partly successful and half the wound opened up for a second time. So we had to allow this big wound to heal from the inside out. Phoebe also got a tummy bug in the hospital to complicate the dressing changes further. We were in hospital for 9 days in total. It was about another 6 weeks of daily dressing changes before the wound healed up by itself. Phoebe now has the most awesome scar across her back which skirt and trouser waistbands seem to want to sit on, so it gives her some pain if a garment is too tight. She now prefers to wear her loose PJ's when hanging out at home.

Through all this we had the agonising wait to see what the biopsy results of the 'lump' were. After a delay getting the results they came back negative. Thank God is all I can say.

Caitlin Peoples - all the love in the world you dear wee girl.

Post op - the healing continues

Phoebe's facial recovery has been brilliant. For a while she has 'whiskers' before the stitches around her nose fell out. Sally is really pleased with the progress of Phoebe's healing and how the eyes now close so much better, BUT (isn't there always a But?) Phoebe had a small satelite nevus removed from her leg. We asked for it to be removed at the last minute, as it was very itchy and has been scabbed over (and often infected) for some time. A week after the operation, the nurse removed the Mefix tape from Phoebe's leg and instantly called Sally back into the cubicle. I knew something was not right but not to the extent I saw. All the stitches had popped in the wound and it had opened up. It did not seem an option to take Phoebe back to surgery to re-stitch it. So we have, for the last 5 weeks, been taking Phoebe every 3-4 days to Plastic Outpatients to have Phoebe's (moist) dressing changed. The wound has to heal from the inside out. Sally warned us it was a 6-8 week healing process but I think we are realistically looking at 10 weeks. No bath, no shower, no swimming either. Having the wound moist (research shows it heals quicker this way) has an effect on the surrounding skin making it red and inflamed, so there are all sorts of knock on problems to deal with too. Phoebe has been an absolute trooper through this whole process though and not once has she cried out at all the dressing changes, the wiping, the washing, the creams and the re-dressings. She is the most amazing wee thing.

That time again

Monday morning - kids fighting, breakfast being eaten by 1 out of 3 kids, packed lunch creation... still in progress, shopping list being devised, shoes needing to be located, radio blaring and then the phone rings. Who can that be?

"Hello Mrs Simcott, Sally would like to operate on Phoebe this coming Wednesday. Can you come in at 1pm today for her pre-op assessment?" Boy did that stop me in my tracks.

We decided not to tell Phoebe until the morning of the planned surgery. Having no real concept of time it seemed pointless to tell her any sooner. Plus it has been 6 months since her last surgery and I was not too sure how much Phoebe could remember of past surgeries anyway. As Seal put her in the car at 7.15am (still in her PJ's) she said "Daddy,where we going?' Seal told her where and that there would be toys. She seemed very happy with the explanation. If Phoebe has any negative memory of her times in hospital it was not in evidence on Wednesday. At 2.75years old Phoebe handled it all beautifully. She went into the operating theatre with Seal (we even got a chuckle out of her about Daddy's silly surgical outfit), she breathed the strawberry gas, she went to sleep. Phoebe woke up 3.5 hours later with upper and lower skin grafts to both eyes, some z-plasty, some scar revision (where it had healed very thickly), new nostrils, and two satelites (one on her hand and one on her leg) removed and resculptured eye brows. Not bad going. The anaesthetist gives magic drugs which make Phoebe's 'resurfacing' very slow and for the next 6-7 hours she was groggy and slept on and off while wrapped in our arms. As we have been such 'regulars' to the hsopital we were permitted to take Phoebe home that night. She slept thanks to Paracetomol and Coedine but it was fitful, but better than any hospital sleep - so we were pleased about that. Thurday morning Phoebe woke up and realised she was temporarily blind - scary. She sat on my knee all day and kept reaching up to make sure it was indeed Mummy's knee she was on. A tiny gap appeared in her in her right eye which enabled Phoebe to see a bit of her world by lunchtime. The next day (Friday) was much the same Phoebe was very tearful and if we missed the next paracetomol dossage it was obvious she was in pain. Luckily she did not want to do much than sit on my knee, with such limited vision just walking to the kitchen is fraught with danger.

Saturday has been 'interesting'. I took Phoebe back to hospital to get her right eye lid checked out. The graft looks very black to me, but I have been assured there is signs of 'pinkness' and so will have to wait until Tuesday when the dressings come off and can assess things further. Phoebe has her whole forehead in bandages. She believes it is the banadges which are preventing her from seeing. She has been briliant at not touching her face. Seal told her after surgery not to touch and she solemly replied "I won't Daddy. I promise" Heart breaking in itself. Anyway, today Phoebe has even more vision in her right eye and there are signs of reduced swelling in the left eye too. Phoebe was nearly back to her normal self but her limited vision is getting even more dangerous as she tries to walk down the decking steps or negociate the patio with all it's bikes, scooters, cars and discarded rackets. Phoebe hardly gets into any scrapes she is a careful girl and heeds warnings too, but she has had more bangs to the head in the last 3 days than in her whole life time, or so it feels. These have not all been due to her vision impairment. I was wrapping a blanket round her legs to take Phoebe for a walk when my hand banged into her face and my heart sank, followed by some serious tears from Phoebe. Anyway tomorrow is one more day further from surgery and hopefully we will have two seeing eyes and and even happier little Phee.bee.dee.bee.

Little Miss Gorgeous

Up date

Well just to let you all know that we are on hold until the New Year for any further operations for Phoebe. Phoebe's face continues to heal and lighten. Phoebe's left eye still requires some 'work' as the lower eye lid does not touch her eye ball, so we will need a new skin graft there. Also Phoebe's left nostril has 'expanded' inwards and Phoebe keeps picking the skin, thinking it is a "boo-gar Muma", so that too will require work. Then we still have to make the decision on what to do with her eyebrows which are still infact Nevus.

For now we are just enjoying no hospital appointments and the warmer weather. So for now...

Happy Christmas and a Healthy New Year to you all.

Hug your children and hold them tight.

Love
The Simcott

Just a little hiccup

Friday (22nd Sept) Phoebe had her dressings changed. Things were looking so good that we all decided (we=the 6 nurses and 3 Dr's who had come to see "The Unveiling") that Phoebe's skin graft was healing so well, that we no longer required a dressing. No-one saw Phoebe from when we got home at 11.30 until when we went to school to pick up Henry. As soon as the school bell rang, out ran Henry from his classroom. He stopped in his tracks, upon seeing Phoebe, lifted her big punk hat up off her face and declared "Mum? Phoebe has a new nose". How my heart soared to hear such a lovely thing.
However, at 4.30 Phoebe slipped (exactly how remains a mystery) by the back door and banged her nose on the glass. There were a few tears but she was OK. I knew however, just by the colour the skin had gone that all was not right. Half an hour later and Phoebe was bleeding from a small hole in her new skin, to the left of her nostril. By 6pm I was too concerend to leave things and was advised to take her back into Hospital to get the bump checked out. The up shot was (and to cut a very long evening, short) that at 11.30pm Phoebe had to have an emergency operation to remove the blood cloth which had formed under the skin. The biuld up of blood was putting the new skin in jeopardy. As I hate hospital stays I took Phoebe home at 3am on the promsie we would be back at 8am for an assessment. 4 hours sleep at home is worth it's weight in gold in comparison to the semi-sleep you get in hospital.
So back in we went at 8am on Saturday morning and by 10.30pm we were cleared of the blood cloth emergency and as far as we were could see no further bleeding had occurred.
Phoebe now has a black/blue nose which is a real shame as the whole skin graft was looking a beautiful and healthy pink. Still it will all fade and we are already so pleased with the results so far. It can only get better.

Don't be scared. It is Phoebe behind there!

Three dressing changes have been completed now. The last one without any sedation at all. Three stitches out from the scar on her colarbone to boot. My bravest of brave wee girl. All slightly more bearable thanks to a nurse blowing millions of bubbles and keeping the hysteria at bay.