Tuesday, 28 September 2010

Let battle commence!

Well Sophie's MMR and other pre-school injections have been postponed until next Monday as they had ran out of MMR jabs and it was pointless doing one lot this week and more next.

Got to get Sophie's flu jab sorted too. This year it has swine flu protection included, so those people that refuse to have swine flu jabs wont get a flu jab unless they have this new 'combined' form.

Big news (I will duplicate any tube weaning updates via this blog and our feeding problems blog).

Had the appointment today with Sophie's feeding psychologist and dietician.

Well...

Today we have started to tube wean Sophie.

OH. MY. GOODNESS.

Before you freak out, we wont be going guns blazing and just cut off her tube milk completely though, it will be a gradual process. Sophie has 5 bolus milk feeds throughout the day via her tube.

The first that we have culled is her teatime feed.

We will try this for one whole month to see if it will trigger Sophie to associate that eating food will cure the hunger sensation. If this is successful then the next to be culled will be her breakfast feed and so on until no tube feeds left.

This is not going to be an easy ride, currently Sophie gets very cranky when she is hungry and wont normally settle until she has whichever tube feed she is due.

ALL of her nutrition has been via her tube for nearly three years!

Monitoring her weight is going to be important and I will do that each week and then speak with her feeding team for a progress report. I am so glad we have them on board, I trust them immensely and I know they have Sophie's best interest at heart.

There is no concern with potentially losing some weight as she currently has a fat supply that would put a hibernating animal to shame :)
Obviously bowels are another area that will need to be monitored closely too. They will also liaise closely with Sophie's CF team and bloods will be monitored if deemed necessary.

I cannot emphasise how hard this whole process has been.

There have been lots of tears and heartache.

Until you have a child that would rather go to sleep and become unconscious than try a tiny morsel of food, I guess you will never fully see how difficult this has been for us.

I know it is going to take time, there will be huge set backs, there are going to be days where it will seem easier to just give in and tube feed, there are going to be days when we have to go back and tube feed, but I am excited.

I am nervous.

I am apprehensive.

This has to be tried though, for Sophie's sake.

So this is it, the beginning of the end hopefully. The end of one of the hardest battles I have had to endure with my daughter so far.

I hope you stick with us, I know we are going to need lots of positive energy and would love you to join us on this huge journey of attempting to convince my three year old daughter that eating is enjoyable!

Day 1 pictures.














Take care all

xxx

Friday, 24 September 2010

Cough swab results.

I text Sophie's CF nurse this morning to see if the results were in.

And the verdict is...

Mr Staph has currently vacated the party!

Soooo relieved.

However, Mr Pseudo is still happily resting with his slippers and pipe deep inside Sophie's lungs.

Damn it.

I still don't think I have fully come to terms with this, each swab I hope it wont show.

I hope it will have gone.

Although she shows no symptoms at all, her cough has returned to it's crisp, dry self.
In the back of my mind I'm scared of what it is doing 'down there'.

Chest xrays haven't been possible to do for a while now due to Sophs non compliance.

I say non compliant, however it is more like aggression towards having xrays performed.

She becomes a volatile monster the moment she gets anywhere near the department. The radiographer practically threw us out on the last attempt.

Clearly she feared for her precious machine.

Okay, maybe Sophie did accidentally kick her in the head, but come on, it isn't her fault she reacts this way?

I will have to discuss this with the CF team, but now I feel that every question I want to ask her consultant, I cant, for fear of feeling like I'm asking more than a typical parent would.

They had mentioned doing a CT scan instead and just put Soph out for the occasion. Would be more detailed I guess.

Not been mentioned since though and if I bring up the subject, then it's going to look like I'm 'dictating' to them and that isn't the case at all.

I'm just a mum wanting to know if any damage is being done to my babies lungs.

Every centre seems to work so differently.

Who is right?

It's such a horrible beast as it is without discrepancies across the board.

I guess I just have to have faith in her team (which I have, I really do) but feel like I'm stuck in a weird place with some of them now (the doctors).

I still feel like pseudo is a ticking time bomb waiting to explode when we least expect. I really prefer the militant approach of going in with the big guns and trying to blast it out of the stratosphere.

Guess I'm just feeling bad for my daughter.

After all, she's the one with a rampant beast inside her.
I just hope it continues to behave, last xray showed no lung damage at all.
I hope that is still the case.

I'll leave you with Sophie's weekly baking efforts.

On the menu this week-Thomas the tank engine cakes!

I'd just like you to bare in mind that Sophie made these all by herself except for the actual cooking.



Mixing..







Icing and decorating...







The finished product :)







Close up of the detail





They were absolutely delicious! She'll soon be a better cook than me but that wont be too difficult as I can barely boil an egg!!

Take care all

xxx

Wednesday, 22 September 2010

Tearing my hair out, literally! Advice sought.

Please.

3 months after I had Sophie, I lost a lot of hair. Quite normal in some pregnancies as my hair got really thick during and then I lost all the extra hair once my hormones settled down.

I had a little bald patch it was that bad but easy to hide.

Fortunately, it all grew back, took about 2 years in total to get back to normal though.

I had a miscarriage about three months ago, total shock pregnancy and then I lost it.

Now, I am noticing my hair is coming out again, thankfully not as much but I just wondered if anyone has any miracle tips that I can try. (Again I know this is normal in some cases after a miscarriage too).

Sophie has her injections on Monday so I will speak to her health visitor in case I need bloods checking, but just wondered if anyone has any practical tips for damage limitation!

Many many thanks :)

xx

Tuesday, 21 September 2010

Port flush

Well yesterday was the dreaded port flush.

Sophie was a good girl and allowed me to put on her emla cream before we left.
She didn't want the dressing on though, but after a little coaxing she gave in but wasn't overly impressed.

I was surprised at how happy Sophie seemed when we arrived on the ward and we went straight outside to the out door area to play while we waited for her sedation.

I had to sneak Leeber the Lemur into her bag as she told me in no uncertain terms that, and I quote, "I don't want him exposed to the bad stuff".

She's three years old for goodness sake!

Exposed? EXPOSED?

I have no idea where she has picked up that saying and to use it in context is crazy!

Midazolam was given and it didn't appear to be working, she was still running around 30 minutes later which is abnormal for her.

After myself and the nurses looking at her driving around madly in a toy car worrying that our luck had run out.

Bang.

Her eyes narrowed and she got wobbly.

Into the room we rushed and sat her down and the nurses got to business.

Second attempt the flush was done. Much less chaotic compared to previous attempts. Sophie was still fighting some, but the whole process seemed calmer somehow.

Bertie still bleeds back too :)

One of her nurses asked Sophie if she would cough on a stick for her and Sophie was happy to cooperate.

Now we have a short wait to see if Staph has left the party. Lots of positive vibes needed please.

While we waited for the sedation to wear off a little, Sophie decided she was hungry and ate a whole pot of dairy lea, bit into two crackers and actually swallowed some and had 9 spoonfuls of yogurt.

Fantastic.

So all in all not a bad visit.

I asked Sophs CF nurse if she could help out with the laxative prescription issue and she kept the copy of the repeat script and said she'd sort it for us.

I have washed my hands of it, I'm sick of the hassle every month so hopefully it will be sorted now.
I'll find out in a week or two.

Sophie was a little bit strange on the way home.

Due to the sedation kicking in a bit later my happy 'drunk' decided to become an angry 'drunk' and was aggressive.

First time she has reacted to midazolam like this, luckily Ian was able to come home from work early as it was very difficult for me to manage her like that.

After a few hours she was fine and no memory of the days events.

Job done.


Injections on Monday and I see the feeding psychologist and dietician on Tuesday.
Will keep you all posted on the swab results also.

Take care all

xx

Sunday, 19 September 2010

Party time at the zoo!

We had a fab day today!

I wasn't sure how a birthday party would evolve at a zoo, it was a totally new experience and really entertaining.

We were late getting there, punctuality is not my best trait if I'm honest but a few issues, coupled with horrendous traffic equated to us missing the first half an hour.

However we managed to get on the train that led us up to the castle to meet everyone else.

Sophie got to pet some animals and then make her own decoration with coloured sand.

This activity wasn't completely without issue though. One of the bigger children managed to accidentally pour sand on Sophie's face and some got in her eye.

After a few tears and face washing most was removed.

Lots of eye baths and monitoring has now begun.

We got to have a look at some of the animals, Sophie seemed to like the sea lion. He resembles someone but I cannot think who...




Next we went for some party food, Sophie wanted to sit with Amelia's mum, Ann. She did try some sandwich crumbs and some chocolate cake. Her drink of choice today was orange juice.


Sophie insisted on having a large glass. I'm going to have a nightmare of a time if this is a glimpse of things to come!

Anyone see a pint drinker in the making?




This cake was delicious! She actually looks like she knows what she is doing...





Mmmmmm.

A few crumbs passed those lips I am pleased to report.





The children then had the opportunity to have their faces painted but no matter how much coaxing was tried, it was to no avail and Sophie refused point blank to have hers done. She still has huge issues with strangers touching her face.

Here is the beautiful birthday girl Amelia...

Tiger queen.




I'll leave you with a few more pictures of some of the other things we got up to. Tomorrow is the dreaded port flush and I will update the events in due course.

Take care all and hello to all the new followers!!


Just a really cute picture...




Ready to blow her bubbles.




Deep breathe





Blow blow blow.





Daddy's girl, she loves to squish Ian's face up..





Looking out at the animals, she loves them.





Never leaves empty handed :)

This is leeber the lemur. Sophie cuddling him as she has her milk feed in the car..




We popped round to my dads on the way back and she was happy to show Leeber off.




Take care all xx

Friday, 17 September 2010

Normal service has resumed!

Back in the present now, promise! Thanks to all of you who managed to survive the previous 3 blogs and hope it has given you all a better understanding of Sophie's 'other' problem. I needed to get it all out there. Thanks again.



Not a major lot to report this week, Sophie's cough has settled down a lot and she has nearly finished the fluclox that hopefully has kicked Staphs arse!

On Sunday we are going to a birthday party at a zoo, how fab is that! The party is for Amelia who is the daughter of Ann, who co-writes Will my child ever eat? which if you didn't know is the other blog I write on. Sophie is excited.


On Monday we have the dreaded port flush :)

Sophie's CF nurse has ensured that the sedation dose is going to be correct otherwise she will personally harm the doctors. She will be there this time so all should run smoothly.

I'm hoping for no more trend setting antics if Sophie can control her bladder a little better! ;)
I'm going to see if we can sneak a cough swab whilst there to see how the antibiotics have done.

Positive thoughts needed please.

The following week I am meeting with the feeding psychologist and dietician to put the wheels in motion for Sophies tube wean. Apparently I am quite rare as I want to get my child to eat and off the tube.

This struck me as odd and I asked why?

Apparently, many parents in our position choose to keep their children tube fed to keep the benefit payments!!

What the ****?

That in my opinion is so wrong on many levels.
Does anyone else have any thoughts on that?

Also that week, Sophie has her second MMR vaccination. Controversial but just wondered what other parents have decided to do regarding this jab?

To me it is a no brainer, she's having it like she did the first dose, but with so much media hype it's difficult to get the facts.
The repercussions of not having it are too severe for me not to agree to Sophie having it.




Sophie made some biscuits at her Nanny's this week...







Every parents nightmare when their children have been cooking.
"mummy are you going to try one"? :D

We had eaten some before I managed to take a photo. They were not as bad as they look actually!

Ginger :) Sophie was sooooooo proud of them.







Little miss couldn't get her umbrella up quick enough in the rain.

She calls it her 'under brella' :D






"Mummy can you see under here"?





"Woahhh! Yes I can sweetie" Thank goodness for child friendly caps otherwise I fear I may have lost an eye in this incident!!!





That's all for now folks.

Stay well everyone and take care.

xxx

Thursday, 16 September 2010

TOF part 3 (finale)

The recovery...

12 hours post op, Sophie started spiking temperatures 39C and above. IV antibiotics were increased as she was already on some as a preventitive post surgery.

Bloods were taken.

Sophie was septic.

She fought well though and things gradually started to improve and the neonatal team got on top of the infection.

Her surgeon was happy with her progress and decided he wanted to take her off the vent at 24 hours post op.

Absolute disaster.

Ian and I just happened to walk into the unit as they had taken the tube out and I looked up at the monitor that was alarming and her sats were 68%, 56% 48% and continued to fall until we were ushered outside.

Lots of running in and out from doctors as we waited. I knew they were trying to get her back on the vent and stable but I didn't let on to Ian.

We were called back in after what felt like an eternity and she was stable and back on the vent. The morphine that she was having to keep her pain under control had caused her to have a respiratory arrest and they needed to wean the dose down before they tried again.

The following day, Ian and I were allowed to have our first cuddle with Sophie whilst she was still ventilated and low and behold, little miss naughty nappies decided she was going to wake up.

She was ready.

She yanked out the tube and extubated herself.

From that moment on, she was able to breathe for herself.

Her recovery for the next few weeks was good. She got bad jaundice and needed phototherapy for a few days to reduce her levels. She started to drink orally and we were able to reduce her tube feeds. She wasn't strong enough to breast feed but I continued to express milk for her.

We were eventually sent back to our local hospital after 3 weeks and as we walked onto the ward so happy to be nearer home, we were met by a consultant.

Leicester had tried to catch us before we left. They had results from the guthrie test.

Sophie had Cystic Fibrosis.

I couldn't hold it together anymore, I broke down and cried. It took a long time for this to sink in. She'd already been through so much. It wasn't fair.

I was angry.




Forward ahead to 5 months old.

We found out Sophie was pancreatic sufficient, no enzymes needed, yay!
Reflux had been a terrible problem and Sophie had steadily become oral phobic after needing to have the join (anastomosis) of her oesophagus stretched 4 times.
She had spent most of the last 5 months in hospital due to all the surgeries she had needed.

Decision was made to have a nissen fundoplication done to stop the reflux burning her oesophagus anymore. Operation number 6.

We continued to feed Sophie via NG tube as she wouldnt have anything near her mouth. A year later she had her peg fitted and exactly a year after that it was changed to a mic-key button. Operation number 9 was her port being fitted. 10 if you are pedantic and count her longline insertion :)


Sophs TOF and CF do help and hinder each other. The scar tissue left in her trachea causes her windpipe to be a bit floppy and this causes her to have a croupe sounding cough that is dry and crisp.

It is REALLY loud.

Obviously scar tissue in her trachea isn't great with CF as it can cause her mucous to get trapped and lead to more infections.
The force of her TOF cough does help her to shift mucous at times though, so it is swings and roundabouts.

The odds of being born with both conditions is approximately 1 in a million.
I know a family here in the UK who have a child born with both, they are a good source of support as we are writing the text books with our kids.

Leave you with a couple of pictures.

Her lifeline, her mic-key button.






This is Sophie's TOF scar now at 3 years of age. She was cut from the middle of her chest and round to the middle of her back. They had to go through her rib muscle, move her little lung out of the way and perform the surgery. Amazing really. (ignore the red blotch and scratch, Sophie decided she had an itch just before I took this)

The scar has really faded well but still very much there as a reminder of one of her battles.





I haven't detailed everything as I would have been here until next year blogging about it. If anyone has any questions, please ask. I'll try and answer as best as I can. I'm bound to have missed something really important out!


Sophie continues to improve with her oral aversion (phobia). She is still solely tube fed at the moment but continues to taste foods.



Still loves her ice cream at nannies!




Take care and thanks for reading!!

xx

Wednesday, 15 September 2010

TOF Part 2

The operation...



This image is similar to the one drawn by Sophie's surgeon. The bit with the pouch is her oesophagus (food pipe) so you can clearly see what was wrong with her insides!

Ian and I sat there, staring at this drawing not saying a great deal.

Her surgeon was very upbeat and optimistic, however he did inform us that he wouldn't know exactly what was going on until he 'got in there'.
He explained that he may not be able to perform the correction if she had a long gap atresia. This means that the two ends of the oesophagus would not meet and surgery would be postponed until the ends of the oesophagus had grown enough to be joined together.


Great.

We relished the thought of signing consent for our newborn when no one actually knew what they were going to be doing until she had been cut open.

Her surgeon also explained that she would have a TAT tube stitched into her oesophagus (like an NG tube) post surgery so we could feed her. The reason they use a TAT tube is to prevent her from pulling it out as reinsertion would not be an option for a while due to the possibility of causing damage to the anastomosis (the join of the ends of the oesophagus).

The operation was scheduled to be done the following day but prior to this, Sophie would be scanned from head to foot.

Chest xray, abdominal xray, bloods, ultrasound of her heart, and ultrasound of her kidneys and liver.

All came back okay except for her heart, which showed a small PDA (common in premature babies and sophies would close on its own) and she also had a very small ASD.

Taking Sophie down to the theatre was hard.

We didn't know if we would see her again.

We didn't know if any damage would be caused during surgery.

We kissed her goodbye and left in tears. Hoping that the surgical team would keep her safe.

About 4 hours later, we got a call from her surgeon saying that things were going to plan and there were no 'extra' complications.

After 6 and a half hours her surgery was complete and she was taken back to the neonatal unit where she was ventilated.

We couldn't hold her, cuddle her or kiss her. It was hard.





Although we were relieved to know she was okay, little did we know of the recovery to follow and what else was lurking around the corner to blow an already fragmented world apart...

Testing one, two, three.

My blog doesnt seem to be updating on peoples blogrolls properly can anyone see this? I know my last post didn't update on some blogs????

If you can will you let me know. Many thanks xxx

Tuesday, 14 September 2010

Lets talk about TOF, baby!

Part one: The birth.

I have noticed that a number of people are checking out my 'What is TOF/OA page?' and after re-reading it, it confused the life out of me so thought I would do a blog about it and try and explain it a little better. It was and is a HUGE part of Sophie's day to day battles along side her CF.

Rewind back to me being 30 weeks pregnant.

Huge you'd imagine?

Wrong! I was still in my UK size 10 jeans with the teeniest tiny baby bump ever.

Give it another 2 weeks and my bump EXPLODED to the point that there was no give at all, my tummy was rock hard and ready to burst!

I visited a specialist whom I was under due to a latex allergy and she happened to comment on my size (way to make a girl feel beautiful ;) ). She had a feel of my stomach and told me one of two things.

1) I was going to give birth to an elephant.
2) I was full to the brim with amniotic fluid and needed further investigations for gestational diabetes and an ultrasound to rule out other 'problems'.

All the tests were ordered and I was booked in for my scan. I was negative to gestational diabetes. I had to wait a week or so for my scan and never made it...



At 35 weeks my waters broke in spectacular fashion and contractions started so off to hospital we toddled.

After 4 hours the contractions stopped, I was scanned and no abnormalities detected. I was also given a steroid injection to mature the babies lungs as she wasn't going to make it to term now my fore waters had gone.

I was kept in for 48 hours and nothing, so begged to go home.

The following morning I woke up vomiting at home, so had to go back to hospital but no need to rush. On the way I had some lower abdo discomfort but no contractions.

Arrived at the delivery suite happily joking with my mum as Ian had gone with his dad to watch a football game (I told him to go)but knew he knew I was going in to get checked over.

I was examined at approx 3.15pm, 2 cm dilated and no sign of a contraction.

The midwife thought I wasn't in labour and neither did I but we had to wait for a consultant to see me.

At 5.00pm Ian arrived from the game, he left at half time as he had a 'feeling' he needed to come. By this point I still had lower abdo pain but was walking around with no contractions.

At 5.30pm I suddenly was unable to walk, assisted onto the bed and examined.
I was 10 cm dilated!

At 6.20pm Sophie had arrived surfing on a wave of amniotic fluid weighing in at 4lb 13oz (2.25kg)

That quick! I recommend this kind of labour!! But the poor midwife didn't know what had hit her.

I attempted to feed Sophie but she sounded like she was choking on her milk so they wanted a doctor to look her over in PICU as there had been so much amniotic fluid.

I had a quick shower, stripped my bed (nurse in me!) and we packed up and moved to the intensive care unit where we tried to feed Sophie again.

This time she went blue, her sats dropped and she was frothing at the mouth. She was suctioned and they explained that they would try and pass an ng tube over night to get some feed into Sophie as she had had nothing since birth.

Ian was sent home, and I returned to the ward.

The following morning I had woken needing to express milk so once I had done so, I told the midwife I was going up to PICU, she said that a doctor needed to speak to me and would probably be there to meet me.

I had the LONGEST walk in history, my heart was pounding, I felt sick.

What was going on?
Was she okay?
What had they found?
Was she still alive??

The doctor did meet me at the door and took me into Sophie. No ng tube, however she did have a small tube in her mouth draining out her secretions and some IV fluids running.






He explained that they had tried to pass an ng tube unsuccessfully and when they had xrayed her, it had met a dead end and had looped back upwards and came back out of her mouth. He showed me the xray and I saw it for my own eyes.

He then explained that they thought she had a tracheo oesophageal fistula, and they were currently contacting the four hospitals in the country that could perform the life saving surgery she urgently needed to see which had an available bed for her.
An hour later Ian had arrived and I explained everything to him.

The doctor did give us some detail but to be honest I only took on board some of the information, as I felt like I was watching something that was happening to someone else.

It wasn't happening to us, it wasn't to do with our newborn tiny baby, he wasn't telling us that without the operation she would die, and there was a possibility she may not even survive the surgery.


Devastated.

A bed was found in Leicester and when the ambulance arrived with a neonatal nurse and the most high tech incubator I have ever seen, she was blue lighted 40 miles away and we followed in our car.

Unsure of what was going to happen, if she would survive, heartbroken our new precious baby had a fight on her hands.

Dazed.

Confused.

Uncertain.

Scared.



To be continued...

Sunday, 12 September 2010

Christening part one...

We have had a lovely day at Esme's Christening today. I only have some dodgy phone pictures to add currently, so when we get the better pictures I'll post them in part two.

Esme was so well behaved, didn't cry once, she is such a darling :)

Ian had the opportunity to feed Esme which was a really surreal experience!
We were only able to feed Sophie orally for a short period of time due to the reflux problems she suffered. I think for a two week period she was able to guzzle her expressed milk down like any other baby, but as her problems worsened, it could take an hour for her to take about 20 ml orally.

So to see a baby drink like that was such a new experience for us!

Another friend of ours was there with her two children and again it was strange to see a child the same age as Sophie tucking into food like there was no tomorrow-again, something we aren't used to!
Sophie was taking sips of drink though :)

Time for some pictures. Sorry for the quality of these but more should follow soon!




Here is my gorgeous Goddaughter, Esme Grace, how cute is she!!!







This is Esme's mum Sam with Sophie, she is my best friend and although I don't see her as often I'd like, she is my rock and lifeline to keeping me sane! We did our nurse training together so she understands the stresses of my job also.







My blogger debut! Sophie and I :) Soph gets her looks from her daddy, who conveniently is camera shy!






Another of Soph and I. (Soph is difficult to snap as she never sits still!)




Little miss posing.



And another..




Sophie has the ability to never leave a party empty handed! This is what she came home with! BALLOONS! Lots of them :)






Quick blog today, Soph is still taking the fluclox for the Staph growth and she seems well in herself now. She is shifting some clear mucous a few times a day though. Just hope this does the trick. I feel much better too and had similar symptoms Sophie had last week. No cold per say, just felt achy, tired and sneezed a few times. Weird but glad it's passed!

We see Sophie's feeding psychologist in less than two weeks to start planning the tube wean. Scary!

Take care all.

xx

Friday, 10 September 2010

We actually got the right prescription ;)

For once...

When I went to collect Sophie's flucloxacillin prescription I was feeling great trepidation, but to my surprise it was completely problem free!

The script was signed and all correct.

Woohoo.

Sophie started the antibiotic on Tuesday evening so i'm crossing everything possible that this clears her of the Staph infection.

She doesn't need another full time resident in her lungs.



Pseudo is more than enough thank you very much.


Her cold appears to have settled down, she wasn't particularly productive with it, just tired and nasal sounding with the odd sneezing explosion.

Delightful.

As she is the sharing sort, I feel she may have passed it onto me :)I feel okay though so no need to feel sorry for me just yet! :D

I spoke to her CF psychologist earlier. She was just checking in on how things are and also prompted me to remember her next port flush is due in less than two weeks.

They come around so fast!

She is going to ensure a plan is in place making sure Sophie gets the dose of sedation she NEEDS, not what the ward doctors deem appropriate.
She doesn't want her to experience anything like last time even though, fortunately all she remembered was going shopping for googly eyes!


Watch this space for the drama.



In other news, we have recently being awarded another blog award!!






From Lil' Chris's mum Michelle. Thank you so much!

I love her blog so am really quite flattered! Go check it out and enjoy, her children are adorable!



As part of my acceptance post I have to sum up my blogging philosophy, experience, and motivation in 5 words.


Hmmm...



Love.

Humour.

Determination.

Awareness.

Support.


Now I am going to award this to three blogs I also love and introduce you to if you haven't already stumbled upon these little gems.


Keeping up with the Jones'. They have a beautiful family and their little boy Bryce has CF. Go check 'em out!


195 roses. This blog is an amazing insight into an amazing set of parents. They have three children all with CF and I am in awe of how they manage to do it! Please stop by as they have had a really tough time lately.


Strange and beautiful. This is my first award to a non CF blog! Rachel's daughter has autism. Rachel is an amazing writer and her blog is well worth reading.


Blog awards to me aren't just mere 'trophies', it's nice knowing that someone is taking the time to read your blog and enjoy it. I also find that this is a good way to introduce people to new blogs that they may not have encountered.
For all other blogs I follow and love, check out my blog roll or my profile for a whole load more not listed yet!


On Sunday we are heading to my best friends daughter's Christening, I am also going to be godmother which is an awesome honour! I'll try and get a few pictures!

And finally, could you all do me a favour and stop by Gems blog as she is having a really crappy time at the moment with her health, her sister and she's also starting uni very soon. I'm sure she'll appreciate some bloggy love!



I'll leave you with a couple of pictures of Sophie and take care all xx




This first picture shows Sophie with a piece of ham in her mouth, HUGE breakthrough as all she would do was lick it. Not quite chewing and swallowing yet but all progress!








Sophie on the way to nursery again, she insisted I took this photo before she would go any further!



Monday, 6 September 2010

Permission to scream?

Just a little bit?



Well I popped back up to the surgery to pick up the picosulphate script, it was done, ready for collection and even on repeat, yay!

As I got back to my car, I looked at the repeat prescription.

Now Sophie has been prescribed by her consultant to have two sachets of movicol per day and 2.5-5ml of picosulphate once a day at night. This information has been sent by the CF team to the GP surgery.



Can anyone spot the two errors (and I'm not on about the mispelling of night!)







Have you spotted them?


1) Movicol. They are only issuing 30 sachets instead of 60.
2) picosulphate dose at 2mls and this means they are only issuing 50 mls, which again will probably do about half a month at best.

*sigh*

This month we now have enough to get on with but next month the saga begins again with getting her prescriptions sorted. Sometimes I wish we could cut out the middle man (GP) and just get the scripts straight from the hospital. It is a cost thing though and I know the hospital cant possibly fund all its patients!

I think I have lost a few strands of hair from all of the tearing out I have done over such a SIMPLE thing.

Every month it is something else.

Went to collect Sophie's pulmozyme and it now has to come from the manufacturer, they cant tell me when it will arrive but luckily we have a few left to keep her going.


Cough swab results are in...


H flu has packed his little bags and probably moved onto it's next victim, which is good news for Sophie. No sign of it from the swab last week.


However.


Sophie must have very sociable bugs and hospitable lungs as she has a new guest who has joined the party.


Mr Staph.

This is the first time she has cultured this, ever.
Seems to be getting on well with Mr Pseudomonas though as that showed it's ugly head on the culture too.

Fan-bloody-tastic.

I guess it shows why Sophie still isn't firing on all cylinders at the moment. She's still tired, coughing more and quite productive for her. Nice and clear sputum though.

The plan of action is two weeks of oral flucloxacillin, which she will start tomorrow once the prescription is done.

Sophie had this as a prophylactic drug for the first two years of her life to try and prevent Mr Staph from squatting in her lungs. At age 2 it was stopped as she was already culturing Mr pseudo more regularly than we had hoped for.

I'm not sure if it is one we can shift easily but if not, I will be discussing the possibility of her going back on flucloxacillin as a maintenance dose as clearly it worked for her in the past.

Please send us some positive vibes as I am feeling a little over consumed by CF at the moment. I just want Sophie to have a break for a while, she's only 3 and already been through more than most people do in a 80 or 90 year life.

It sucks.

CF sucks.

I'll leave you with a few more 'Sophie in the car seat on the way to nursery photos'.

You may spot the slightly runny nose and the extremely chunky thighs in some of them!

We've also been awarded another blog award, thank you so much!
Will do the details in my next blog.

Until then, take care all
xxx























Friday, 3 September 2010

Do we not have enough to deal with?

Seriously.

*sigh*

Prescriptions.


Anyone who has an illness or cares for someone with an illness will understand the HUGE frustrations that appear every month.

Sophie was seen at clinic and her medications were adjusted for her bowel issues.

A week later we saw her consultant who adjusted her bowel medications again and kindly agreed to write to the GP to ask him to put everything on repeat prescriptions.

Off I toddled up to the surgery to request the prescriptions, however, no letter had been received at the time regarding any of the alterations. NO BOWEL MEDS ON PRESCRIPTION.

One panicky mother, one mobile phone...

Spoke to the CF team who promptly send a fax to the surgery detailing what Sophie needs adding onto her prescription.

Sorted you think?


Wrong!

Go to collect the prescriptions today and there is a fetching little post it note sat on her prescriptions and a confused looking pharmacist.

The Note.



Ask mother RE req (request) to stop movicol.



Noooooooooooooooooooooooooooooooo!




I asked if they had received the fax from the team.

Yes they had, but they also received the letter from the clinic appointment, which was when her meds were first adjusted that said to stop the movicol and no mention of sodium picosulphate!!!

**** frustrated mother alert ****

Luckily the pharmacist isn't a complete robot and knew we were desperate for movicol so had asked the gp to do a one off script for it. Only half of the months supply needed but hey, it's better than nothing!

One panicky mother, one mobile phone... (anyone sensing deja vue?)

Spoke to the CF team again, who expressed that the fax was sent. I explained that they had received the first clinic letter after the fax and clearly hadn't noticed the dates and went with the letter as it clearly looked more formal.

Luckily Sophs team are fab and phoned the surgery themselves (I was actually still there) and re-iterated exactly what was needed and to ensure it was all put on repeat prescription.
They were able to hopefully glue the huge gaping hole that had appeared from the communication breakdown and prevent me from becoming totally despondent in the whole process!

I will know on Monday if this has been successful or not.

Cough swab was abit of a nightmare on Tuesday as it was taken on the ward, not Sophs happy bubble in clinic, so it was a snatch and grab effort resulting in 4 worn out adults but a rather impressive blob of sputum on a stick.

Lets see if the H flu has buggered off or not. Sophie has remained rather snuffly and has been sleeping a lot, so I'm not entirely sure the first lot of antibiotics have kicked this or not. Her cough isn't particularly barking or wet, so again we must wait for 'The call'.

I'll leave you with a few pictures of Soph on her way to nursery. I cant believe that in one whole year she starts school! I don't even want to think about it!

Take care all

xx














































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