We've had a bit of a bad week.
Firstly Soph had CF clinic on Monday and all was looking great. Chest clear, sats 100% and she's even grown in height. We've decided collectively that Sophie is going to have IVs every 6 months due to how poorly she was after the last course. We think that a year is giving Pseudo time to flourish a little too much and then she picks up another bug randomly and ends up very ill.
We then sat down with the consultant to discuss her CT scan results. He has seen them but he's having a problem interpreting them.
Here lies problem number 1..
On first glance her chest looks really bad, however due to the number of surgeries she has had for her TOF/OA repair, he is struggling to determine what is lung and what is surgery scarring, so we have now got to wait until the consultant radiologist completes his report as he is the expert in this field, to determine exactly what is going on down there.
Sophs consultant told us not to worry as she is a picture of health and he isn't convinced it's going to be as bad as he first thought.
So we now just wait as there is a huge back log so it could take a fair few weeks and may involve some consultation with the hospital that did her surgeries.
Soph had also started with a cold and she managed to produce a great sputum sample that was slightly discoloured so the team wanted to wait and see what grew before starting any oral antibiotics.
Tuesday night, Soph had a temperature of 39.9C and was coughing her poor little lungs out. So bad in fact she burst the small little vessels in her cheeks :( So the following day we got orals started as a stop-gap while waiting for the culture results.
Yesterday I got a call from one of Sophs CF nurses. Sophie has indeed cultured something.
Problem number 2...
Sophie hasn't cultured Pseudomonas since early November which has been quite exciting and shows the numbers are certainly on the low side. Mr P is clearly in lazy mode, possible hibernation I'm not sure but we're happy.
Meet the new bitch in town.
Sophie has grown MRSA (Methicillin-resistant Staphylococcus aureus)in her sputum.
To say I am devastated would be an understatement, not because of the media hype around 'super bugs' but because as a nurse, I know how stubborn this bitch is to treat and I know that any extra bugs in her lungs is not good.
It seems to be, that when any other intruder bug gets into Sophs chest, Mr P gets super frisky and either mates or attempts to kill the unwelcome house guest. This then causes a huge flare up for Soph causing increased sputum, cough and temperature, and leaving her feeling generally crappy.
In herself now she seems brighter but her cough is very evident and she's had a little blood streaked sputum again, which I fear greatly.
So as of this evening we are starting a full blown attack on Ms M known as eradication treatment, which involves 2 oral antibiotics for 10 days plus a multitude of creams, ointments and body and hair wash.
We have to get this bitch gone and we will do everything conceivably possible to do this.
I handed all of these prescriptions into pharmacy today, the reaction from the woman behind the counter was priceless when she realised Soph wasn't even 5 yet.
To end on a positive note, we've heard the fantastic news today that the gene therapy trials have secured funding for the next trial phase. We'll be watching it all very closely and I will do a post on what Gene therapy is in the near future.
Sophie took the following three pictures herself on my phone. I think she has a hidden talent as I cant get my iPhone to take pics like these ;)
Can you spot the small rainbow of light on the first one?
Take care all and I hope you will stick with us through this latest battle.
Thursday, 1 March 2012
Well it's been a while! Thanks to those that have actually noticed we've been missing from our small corner of cyber space.
The world hasn't spontaneously combusted which is always nice to know.
I'm not entirely sure where to start as it seems an eternity since I last blogged. I guess a good place to start would be with a Sophie update.
Well the good news is after the 9 week episode of her lungs behaving badly, she has been the picture of health and no lung gurgles or hissy fits to note.
The other interesting news is her sputum samples have remained clear of anything, although we do have a CF clinic in the near future and I'm sure MR P will be cracking open the champagne for his welcome home party. He's a generous chap at times but we see him as one of those house guests you just want rid of as they leave way too much mess and destruction all over the place.
Sophie has also had her first ever CT scan. Now before you start thinking 'but she's well' allow me to explain.
Her consultant decided that now was probably a good time to get one done so we had a baseline for the future. This will be first time we have ever seen her small airways and exactly how her little puffers are standing up to the self destruction mode her CF causes. So this is a positive although it's turning me into a crazy fool waiting on the report to be done.
I need results!!!
The procedure itself is quick and simple however this is Sophie we are talking about and we all know she doesn't fit the general rule of anything.
To cut a long story short, she had it done under general anaesthetic to alleviate any anxieties and the fact that she would absolutely not lie down and be still for the time needed to scan her.
So general anaesthetic number 12 or 13 (I'm losing count now) went without too many hitches. The only minor blip was when she first started to come round. Her chest sounded hideous and bubbly and I noticed a small amount of blood in the corner of her mouth.
As she came too a little more she begin to cough, followed by a retch and she produced a blood clot entwined in sputum the length of her arm. Impressive!
I put it down to possible trauma as she had needed suction whilst under. As soon as the little bleeder was out her chest was crystal clear again and has been ever since.
Bless her I don't like seeing her like this but check out the Sat's in the background! 100% baby!!
Progress has been made with her oral aversion, which had a knock on effect with her having anything done to her face. She finally allowed someone to do a tiny bit of face painting at her school disco where I am told she was tearing up the dance floor.
We also got a way for a few days which we all needed. Quiet place but Soph managed to get some well needed exercise in.
Just general messing about! Googly eyes!
And some craft making which she did at school. I was quite impressed..
And this is one of her creations from a craft kit we tested (blog post to follow)
So all in all that's a brief account of some of the stuff we've been up to. I've had some wonky stuff going on with my body, which has ruled me out of sky diving for at least this year, but when I know fully what is going on I will enlighten you all. Aren't you the lucky ones! ;)
I have to finish with a few links. Please check them out and let me know what you think.
First one is a genius idea created by parents of a little girl called Eva with CF.
They have developed some very snazzy covers to go over long lines and cannula's rather than having an ugly looking bandage. There is a massive assortment of designs you can have and although UK based, they will deliver internationally. Unfortunately as Soph has a port we cant utilise them but please go and check them out. They do children's and adults sizes.
Check out Funky coverups here
The second is a new blog created by Kate who is an adult with CF. She has created a brilliant blog sharing meal recipes for people with CF. So high calorie, high fat. She is also after any of your recipes to add to the blog so check it out and send her your own favourite recipes.
Check out calories and creon here
If you could share these links with others that would be fantastic too!
Right on that note I'm done for now but certainly wont let the dust settle as much as last time. Missed you all!