Well in my defence I have a reason why I have left it so long before writing this.
Right lets zoom back to Sophie's 5 day admission for nebulised Vancomycin. This was our last real shot of trying to eradicate MRSA.
We had already done a couple of rounds of topical and oral antibiotics to kill off this little bitch but had failed miserably.
Vancomycin was finally agreed. Had to be done as an inpatient as the drug can cause some nasty side effects in some people, mainly shortness of breath and a tight, wheezy chest.
So off we went back to the hospital, re-filling the bags we had literally just emptied after her tube wean.
The plan was...
To stop promixin for the 5 days while Soph had the Vanc.
To nebulise salbutamol before every dose of Vancomycin.
To nebulise Vancomycin 4 times per day.
To continue to nebulise pulmozyme.
To start 6 weeks of oral antibiotics on the 5th day of Vancomycin.
So this little lot amounted to 9 nebulised treatments per day. Yes I really did just say NINE.
Sophie was an absolute star.
She was able to have the salbutamol via her ineb but had to neb the Vanc via her old slow pariboy but she did every single dose and didn't waste a single droplet of medication.
Soph nebbing her vancomycin.
To say I was uber proud would be an understatement. I cannot believe how far she has come. This was the girl who wouldn't set foot inside a hospital, wouldn't let a single nurse or doctor near her and would fight any intervention.
This time round she was stretching out willingly for student doctors to examine her and was asking the staff to do her observations. Absolute madness!!
So after 5 days, she was kicked out and sent home on 6 weeks of oral rifampicin and oral clarithromycin.
Time for every bodily function to turn orange again!
Soph has taken it all in her stride which seems her norm now which is fabulous!!
While back home we managed to get quite a bit of snow! This is a pic of the igloo I built Soph. Yep it took me 4 hours to build all by myself! Who knew I had some skillz :D
Soph and I managed to squeeze in :D
I love this pic of Alfie trying to catch the falling snow :D
Soph and her beloved puppy having a snuggle.
Oh there is one little bit of information I forgot!
First culture-NORMAL FLORA ONLY.
Second culture- MIXED GROWTH ONLY.
No Pseudo or MRSA!
So yeah that's currently the best news ever but I'm not about to say MRSA has gone and taken Pseudomonas with it. I'm hopeful MRSA has been eradicated and I do really expect pseudo to grow again at some point but we need to wait for a good 6 months to see if they've gone for good or not.
My current thoughts on the matter are:
Cautiously happy :)
In other news, for those of you who don't use twitter there is a fab CF awareness account and they have just started selling CF Wristbands to raise awareness and they also ship worldwide!
I will post a pic when ours arrive :) They are so bright and lovely!
Sophie is continuing to eat, it's still all very new and incredibly strange to get used to. Ian and I find ourselves just glaring at her which I guess is something we need to stop doing :D
Her weight is continuing to yo yo, one week it's up, next week it's down but she has grown in height quite spectacularly. Literally like we have shoved her in a grow bag full of fertiliser. It's marvellous.
Since being discharged home, Soph decided the winter fun was beginning and picked up a lovely viral infection which as per her norm, sent her chest into a full on hissy fit. So, cue oral antibiotics again, which did the job just fine and cleared up the bark she had developed.
I must add, oral antibiotics she took, well.. orally!
Her last clinic appointment went well and we have decided Soph will be admitted middle of January for her nebulised vancomycin to see if we can rid her of the evil methicillin pulverising staph bitch (MRSA)
Sophie will be an inpatient for 5 days while she receives vancomycin via a nebuliser 3 or 4 times per day. She will also have another cocktail of fucidic acid and rifampicin orally for 6 weeks.
We aren't looking forward to this at all as last time the oral antibiotics gave her tummy ache and in view of her recent tube wean, there could be catastrophic consequences with her eating. However, we have to try and fight the bug and hopefully eradicate it. Mr P (pseudo) hasn't shown himself since the beginning of the year now so Ms M is clearly a nasty piece of work.
However, she isn't as feisty as us and she will hopefully get her ass kicked.
Sophie has been getting into the holiday spirit and had lots of fun, swimming, ice skating and attending Christmas events.
We have also been rather busy with our new fur baby.
We would like you all to meet Alfie!
He is a whole heap of fun! Sophie absolutely adores him and he does her. He was 8 weeks old when we had him and he's now 12 weeks old. If anyone is interested he is a shih tzu :)
Oh and for the record, the picture above was after his first appointment at the groomers and she had put that bow in his hair! Ian was horrified ;D I thought he looked cute!
He's such a naughty boy but so adorable with it. If he's not brushed regularly he ends up looking a right scruffy mess :D He will be getting his coat done properly in the new year to stop knots and butt nuggets settling in his fur.
We will leave this post by wishing you all a very happy and healthy new year. Thank you for all the continued support we've had in 2012. See you on the flip side in 2013.
Sophie and the only thing she really drinks...water!
I had huge hopes of posting daily blog updates during the whole of Sophie's inpatient tube wean, however lack of internet and signal put a stop to it.
Frustrated doesn't even come close to describing my feelings about that.
The reason I wanted to document the whole journey was to help others above all else.
We started this journey 5 years ago and it has been a very long and rocky road in which we have travelled. Many tears have fallen, lots of anxiety, arguments with health professionals and no one who we could conclusively say would definitely be able to help Sophie become an eater.
This is the main problem in the UK.
Where do you go and who do you turn to when you have a tube dependent child?
You can search the internet until your fingers go numb but nothing in the UK stands out. All you find are the many feeding centres abroad which cost a lot of money to attend and leave you with very little follow up once you return home.
Doctors are very good at formulating a plan to ensure a child doesn't completely starve to death ie insert a gastrostomy or NG tube, and very detailed guidance on how to care for the tube, however you will never receive a detailed plan on how to succeed in weaning your child off of a tube and re establish oral eating when the tube is no longer needed.
Here lies a huge problem which actually affects more families than you think.
Sophie wasn't a fussy eater, she was tube dependent and missed all of her developmental stages regarding eating due to oral aversion (oral phobic). This was the main problem, she had absolutely no concept of what eating was and what she had to do. These milestones are learnt during the first year of life, but due to Sophie's severe reflux she stopped having anything in her mouth and missed every experience needed to form the basic groundwork every human being needs, to know how to eat.
Where on earth do you start in teaching another person to eat when the only experiences they have had have been negative and painful?
This was where we were stuck and almost helpless. That was until we met Clarissa Martin.
Clarissa has been the feeding psychologist I have referred to for quite some time now. She has helped guide us to prepare Sophie for a time when we collectively thought she was ready to be tube weaned. Run too quickly and the process would fail, leave it too long and the process would be too late.
What a quandary eh?
Clarissa didn't work alone in the lead up to the in patient tube wean. She had drafted in the help of Dr Terry Dovey who is also a psychologist and was actually the missing link we needed to give Sophie that extra push needed.
Together they formulated a plan and both were present for the tube wean.
The end result being...
Sophie has now been tube feed free for over two weeks and is EATING.
I don't just mean drinking supplements, eating liquid foods or licking solid foods either, I mean actually eating!
She eats toast, biscuits, crisps, fish fingers, fruit and you want to see her get down a sausage roll. Currently she is exploring everything and trying whatever she fancies and I have to say it is an absolute joy to see.
Soph still has a very long way to go, she's moving through the stages of eating in a matter of weeks where all other children have months and years of practice and preparation. We probably wont relax for a good year.
Her gastrostomy will stay in for a while just in case things change dramatically or she becomes very poorly CF wise. We need to see that she can cope when poorly and manage to maintain eating even if just in small amounts.
Although this journey hasn't fully concluded we are very much on the homeward step and we cannot thank Terry and Clarissa enough. Sophie will still have many ups and downs as she works through the stages of eating.
Psychologists have terrible reputations when it comes to feeding disorders but I just want to tell everyone I can that this isn't the case with these two.
Sophie was calm and happy for nearly the whole process, a process in which her whole world was turned on its head. For her to be able to come through this happier than ever is down to the way she was looked after by Terry and Clarissa.
I really just want to conclude by saying if you are a family in the UK in a position where your child is tube dependent you are not alone. There is help available and Terry and Clarissa can both be contacted for possible consult :-
Thank you Clarissa and Terry and thank you to Sophie's amazing CF team who also provided constant support throughout the whole process.
I haven't documented exact details of the process and protocol Terry and Clarissa devised as it was tailored to suit Sophie and every child is very different, but if you have any questions about the process then please ask :)
This sausage roll was demolished in less than 10 minutes btw