Tuesday, 30 November 2010

Results part 2...

The Bronch cultures are back.

Well it would seem that Mr and Mrs Pseudo have had a seperation. I'll call it a trial for now as it doesn't pay to get too optimistic too soon.

Mrs Pseudo has vacated the building and gained custody of the Staph baby as they have both disappeared. If you remember, Mrs Pseudo was the strain that was resistant to Cipro. 'The bitch' as I lovingly referred to her as has for now, gone.

Mr Pseudo is still present though but we knew that he would be. He is sitting in the middle and lower sections on the right side of where the cultures were taken. No trace of him on the left at all. Oddly, the 'gunge' that was hoovered from the right upper cultured nothing?

Obviously we will know more when we see the full Bronch report but that will be in a few weeks time in the next CF clinic just before Christmas.

What I can take from this is Sophie has cultured pseudomonas on and off since she was approximately 6 months old. Going from these Bronch results, it would appear that he isn't causing much bother at all currently which is great news.
I would love to have reported that he'd gone but I'm sensible enough to know that it would take a small miracle for that to have happened.

When you get the first culture of pseudo it makes you feel sick. The emotions you feel as a parent are overwhelming and you genuinely fear for your childs life, but I hope that Sophie shows it isn't entirely the end of the world and she is now 3 years and 7 months and it hasn't affected her yet.

The plan now is to keep things this way.

Her recent episode of sickness I am putting down to Staph. Since she first cultured this she has been poorly and it is only now that it seems to have gone she is back to her baseline.

Just another example of how CF is so unpredictable and each persons journey is so very very different.

We're very pleased with the overall results and really glad the bronch was done. Sophie's IV's are staying as they are as they are her pseudo weapons. Ceftazidime would be the drug of choice but little miss is severely allergic so we will stick with Aztreonam.

Take care all and thank you for the bloggy love :)

xxx

Sunday, 28 November 2010

Bronchoscopy results part 1.

We're home!!!

Got back late last night and it's wonderful. Sophie is so much more relaxed and is hardly bothering when having her IV's.

Back to business. As mentioned on the previous post, Soph was given a large dose of midazolam prior to her anaesthetic where as normally she would just go cold turkey. This caused her to come round from the anaesthetic aggressive and very very wild. She didn't open her eyes for nearly 2 hours and we had to put her on a giant beanbag on the floor for safety until she had come round properly.



When she was slightly more back on the planet we were able to put her into the bed.





The doctor came to speak to us about what he had seen down in her airways.
The news was very positive.

Hardly any mucous, no inflammation!! Awesome.

She did have a very small amount of 'gunge' in her right upper side which he got a good sample of and then hoovered out.

Five other samples were taken and we should hopefully have some results tomorrow or Tuesday. This is the nervous part as it will help determine what she is growing down there. As soon as we have news I will let you all know.



Home IV's have started and going really well. As I mentioned, we are mixing the meds ourselves. This is some of what we came home with!






Here are a few pics of Sophie while still in hospital. She was constantly asking for toast to eat and drinking cans of coke and cups of tea.











This was the view we woke up to yesterday. Not as much as the rest of England but it's still snow, which Sophie adores!!






And Sophie sitting on her bed while daddy gets some well needed sleep behind her, as we had been up at 2 am doing her IV's as she wouldn't let the nurses anywhere near her.





Here are a few of Sophie's meds.







This is the pump used to give Sophie Tobramycin. This is the first time we have given this once a day through a pump and Sophie is unimpressed with it.







You cant really see here but Sophie is connected up to the pump while sat on her nannys lap.






This is me giving Sophie her Aztreonam. We don't use gloves at home as apparently we all share the same bugs. We just have to make sure everything is clean, the tray, the vials, our hands etc and we use the wipes to hold the line so we don't actually make contact with it.





That's alot of photos! I plan to show you all how we make the iv's up at some point so keep an eye out for it. We have to go back up to the ward on Saturday for Sophie to have blood taken to check her Tobramycin blood levels. This is really important as if they are too high, her kidneys could be damaged and also her hearing. She has already had some bloods taken and everything is within normal limits so far.

Most importantly, Sophie is back to her normal bouncy self and it's lovely to see. Now I realise how poorly she had been as her energy levels are crazy now!!

Any questions please ask. Thank you all for your lovely comments again and I hope everyone is doing okay.

Take care.

xxx

Saturday, 27 November 2010

First Bronchoscopy.

Well yesterday, Sophie had her first bronchoscopy and all went really well. The only problem we had was that the doctor had given her a pre-med and when she came round from the anaesthetic she was quite violent and very disorientated. I don't think we'd opt for it again before an anaesthetic!

Her iv's have started, Tobramycin and Aztreonam and we are going to be mixing them ourselves at home old school style, so watch this space for our IV experience. Currently Sophie is howling the ward down during every dose as she still thinks it is going to hurt like her old long lines used to. Hopefully after a few days at home she'll be as good as she was in June after having the port fitted. She has adjusted really well to Bertie suddenly 'growing hair' but hating any of the nurses near her, so we have been giving her iv's from the first dose to minimise any further psychological trauma.

We are still in hospital but hopefully will be getting discharged home later tonight if all continues to go to plan.
I will do a more detailed blog about the bronch and what it showed once home as the Internet connection here is a little hit and miss!

Hope everyone is well and will catch up on all the blogs very soon.

Take care all.

xxx

Tuesday, 23 November 2010

Last few days at home..

If the hospital phone to say there are no beds available, Sophie has a solution!!







Who needs a bed eh???


Friday will soon be upon us, been trying to mentally prepare for the hospital stay all week and I think I'm just about there. Does anyone else find hospital stays just so emotionally draining??

All being well, I'll blog about the bronch sometime on Friday and then hopefully the next one will be when we are back home doing the iv's!

Sophie is nearly back to her normal self now, which I'm putting completely down to the steroids this time. She's back at nursery and generally just destroying the house again with her toys :)
She'll still have the iv's though as part of a tune up.

Think of her like a car...

Occasionally the car totally breaks down and needs seeing to immediately so goes in for repair, but every now and again the car just needs servicing to ensure it runs effectively for longer.
This last month Sophie nearly 'broke down' however she has somehow managed to recover rather well, so instead of needing instant 'repair', she just needs to go in for a 'service' now.

If daddy had to choose what type of car she was, I guess he'd choose a Shelby GT500. She's strong, robust, pretty and very very LOUD :)

Thank you all so much for your lovely lovely comments and well wishes.

Take care all.

xxx

Friday, 19 November 2010

Improvement.

I'm pleased to say that Sophie has picked up a little.

Her energy levels are much improved and although her cough is still evident, I think this 5th or maybe 6th course of antibiotics (I've lost track) has started to help.
It may be the steroids masking some of her symptoms but I'm not going to complain. She's started to sleep better at night and isn't collapsing in a heap at random times in the day now.

I think she may be able to hold out until the bronchoscopy a week today which is good news. She will still have two weeks of IV antibiotics though as clearly something has been causing all this bother. I'm guessing back to back viral infections have stirred up 'The Pseudo family' and clearly they are in need of a good kicking.

We have also had to increase her movicol again as her bowels went into slow motion again and we didn't want her to get backed up like last time. Due to the amount of mucous she is producing at the moment, inevitably she has been swallowing a lot of it and I think it may be contributing to the slow mo bowels.

If anyone is interested in how home iv's work, I may do a short video or at least lots of pictures of the regime Sophie will be having.
We don't usually have pre-made syringes and bags etc as we don't mind mixing them ourselves as we are aware there are a small number of slots for ready made, pre-mixed home iv's and we'd rather someone else gets our slot who may need it more.
If the demand isn't big currently though, we may get the ready mixed ones so we shall see. Either way I will try and blog as much as I can about the experience.

I also want to mention cystic life. I was recently introduced to it via some of the other parent blogs. It's actually a really great CF community set up by Ronnie and his wife from run, sickboy, run and a few of their friends. They are currently on a mass recruiting drive so please go check it out and sign up if you haven't already.

If possible can you also pop by and visit Gem as she is having a really crappy time at the moment and despite all her own problems, always finds time to support other people. Please go send her some positive vibes etc

Also great to hear of how well some of the other little ones are doing right now, really really pleased for everyone :)

Take care all.
xx

Wednesday, 17 November 2010

Small change in proceedings.

Okay so the plan that we arranged for Sophie has changed just a little bit.

Well it's more down to Ian and I. Instead of the chloramphenicol (have you noticed I spell it differently every time!!), we have decided to go with Augmentin duo.

Reason being?

There are some rather unsettling side effects with chloramphenicol, which we would rather not risk with Sophie. The risks are minimal and usually with more longer courses of the antibiotic however, seeing as Sophie doesn't have much luck with odds when it comes to most things we don't want to risk it.

We will save this drug for a time when Sophie may really need it.

So she will have Augmentin Duo until she goes into hospital at the end of next week and continue with the prednisolone which is actually a 10 day course, not 5.

She has made some improvement and has more energy than last week but is still coughing a lot, especially at night. When doing her chest physio I can feel lots of fizzing and bubbling on both sides of her lungs at the moment which is not great at all.

We are still set for home iv's after the bronch though. So hopefully only a couple of nights in providing everything goes straight forward. Should have some culture results on the Monday and her iv meds may be changed depending on what is grown.

I'm getting slightly nervous about the bronch. Not the actual procedure per say but what they may find down there. I guess it is just pre-emptive nerves or something.

To top everything else off I have now got a streaming cold which I am trying in vain not to pass onto Sophie!

I wish I had something more positive to blog about today :)


Leaving you with a picture of Sophie nebbing her saline while playing on Ian's new toy (birthday present)! Her cheeks are glowing but it's all down to her infection currently.








Take care, thank you for all your comments and a big hello to all the new followers, your support is really appreciated!

xxx

Sunday, 14 November 2010

Cysty roses.

Sophie and I popped to visit a friend of mine and her children who we hadn't seen in a while.

I was explaining to Sophie the day before who we were going to see. She turned to me and asked of my friends daughter, "does she have cysty roses like me"?

Eh? Come again?

I asked her if she knew what that was and she said, "it makes my cough bad and my chest poorly".

Hmmmm.

How little credit I give her, I honestly thought it would be much longer before she started to notice that not everyone deals with what she does. When on earth did she grow up so flipping fast?

No time left to sugar coat things anymore.

Don't get me wrong, obviously Sophie is very aware of hospital, doctors, tests, procedures, mic-key buttons, ports... The list goes on.

But, this is the first time Sophie has actually put a name to it and I was very taken a back if I'm honest.
How long she has known, I mean really known I don't know, but now there is no going back.

We try and make her life as 'normal' as possible so that she lives a life with CF, and not a life full of CF.

Having her first proper CF exacerbation at the moment has just reinforced that the beast we have tried so hard to put out of the forefront of our minds, is still very much there in the background.

Steroids have started and already she appears to have a little more energy but she is still poorly. Ian and I have forgotten what sleep feels like as the poor mite is up all night coughing and in the depths of the dark, all we hear is that gut churning, toe curling, sickening cough that makes any parent shudder to the core.

I just hope that the latest treatment and ultimately the bronchoscopy and IVs will give us our bouncy, full of life 3 year old back.

Take care and thank you for all your lovely comments.

xx

Wednesday, 10 November 2010

Time, ladies and gentlemen.





After looking back over the last couple of months, I have actually realised how long Sophie has not been right. She's been on antibiotics since the beginning of October with no real improvement. She's not been her usual rubber self and bounced back to her baseline.
This has proved to be uncharted territory for us as Sophie has never really been particularly poorly.

We have a plan.

Tomorrow, Sophie will start 2 weeks of oral chlorenphenicol and 5 days of steroids. Her port flush will be postponed for 1 week as on the 26th November, she will go into hospital for a bronchoscopy and then start 2 weeks of IV antibiotics.
Any deterioration between now and then and she will be instantly admitted for IVs and the bronch done at a later date.

Hopefully the hospital stay will only be a day or two as we plan to do the course at home now Ian and I are both happy doing them.

Cant say I am surprised as Sophie has been coughing none stop day and night, which is completely off her normal.

Lets hope we get some answers from the bronch, and the IVs ultimately see her through the rest of the winter.

We consider ourselves fortunate knowing that she could have chest complications due to her TOF scarring, that she hasn't been admitted for ill health before now.

I will leave you all with a couple of pictures of Sophie's new 'pet'.
Meet Lulu, a very life-like cat that meows, purrs, moves, and feels like a real cat!


Sophie loves her.











Take care everyone.

x

Monday, 8 November 2010

Dear Mr & Mrs Pseudomonas

I appreciate that you have been incredibly satisfied with your lengthy stay, so much so that you have moved your family into the property, but I now feel that the time has come for you to find alternative accommodation.

You are hereby informed that you have 7 days to vacate the premises that you are currently residing in which is the legal property of Miss Sophie. You have been living in her lungs as a tenant without causing any real unrest or discomfort to the property owner for the past year or more. However, for the last month or so, you have not been sincere in adhering to the advice given by the owner about taking proper care of the property. You are requested to leave the premises and remove all of your possessions.

I hope you will take action to evict the premises within the stipulated time, else the hospital will have to take immediate action against you.

Yours faithfully

Angry Mum.

Saturday, 6 November 2010

Lets get physical

These are some pictures I took of Sophie on the day she out ran a 'healthy' child.
It was hard getting any decent pictures as she wouldn't stay still for more than two seconds!!


This is what she was up to...











































Take care all.

xx

Friday, 5 November 2010

Sophie always has a cough.

This is what one of Sophie's friends from nursery said to his mum when we had bumped into them at a local indoor play area at a farm.

It didn't upset me, it made me realise how kids accept things as 'normal'. This is what he had noticed about Sophie but wasn't phased by it, didn't ask anymore. Just that was Sophie.

The one problem I do see is I don't want her to be defined by her cough and ultimately her CF. I have no idea how to change that.

Sophie will always have a very prominent cough, partly CF, partly TOF. It's loud.
I just want her to be recognised for her and her own accomplishments, not by some disease. I don't want it to define her, she is already an amazing person in her own right but people do not always see past 'the cough'.

Luckily her little friend didn't care, they played for hours. Lots of running, giggling and cuddles, it was lovely to see. What was even more fantastic was Sophie was able to out run him and her stamina level is very very high. He was sat, out of breathe while Sophie continued to climb, run and bounce.

That's my girl.

Sophie is still 16 kgs so no weight loss still, grand! We also tried the garlic however we are switching brands as the odourless one we chose made Sophie smell like she had been rolling round in a whole bag of garlic. It kicked a cold into touch but no one dared go within 50 paces of her.

We are getting the correct brand of Kyolic garlic by quest, this is the one that is constantly talked about and wont leave Sophie looking like a cartoon character where they show the garlic smell, green, steaming out of them! It was bad!!

I'm waiting on the CF team to contact us to organise the next port flush and also the increase in her nebulised saline. I'm very excited about increasing as Sophie is already coughing well during these treatments.

Just over a week in of the antibiotics and very nervous about how the bugs have reacted. Only time will tell. One clear swab means nothing, you have to take a full picture over a period of months to be sure.

Take care all and lots of positivity to all those with their own battles to fight at the moment.

xxx

Monday, 1 November 2010

Thank goodness for the extra hour!

I know some people tend to complain about British summer time ending and our clocks being turned back an hour, but this year I was very very grateful.
I used to love this time of year, always had until we had Sophie and winter became a time of dread. Most people dislike the eternal dark days, others dislike the reality of cold winters. I dislike it due to it being a sign winter is really here and with it lots of bugs and nasties.

However this year I was very glad to gain the extra hour. Why I hear you ask?

Well, after giving Sophie her final feed and medication on Friday night her Mic-key button decided to block in spectacular style. Nothing was budging this build up.
In an ideal world we would have just changed it, but Sophie decided she was going to scream the house down.

Was she in pain?
Was she just being mardy as it was late?
Was she hating getting wet from the ever increasing spurts from the blocked button?
Was she just scared of the numerous syringes Ian and I kept producing like we were some king of magic act?

We still don't know now to be honest, maybe a combination of all of the above.

It became ever so apparent that we were not going to be able to sort this out without her being sedated. So on the phone we get and after speaking to some lovely ward nurses and the doctor on call we set of on our 45 minute journey to her CF hospital at 12.30 am!

On arrival and after being checked in, cue a lot of puzzling over how we would get the sedation into Sophie.

Hmmmm.

Couldn't give her the normal dose orally as she wouldn't take it due to her oral aversion.

Couldn't give it IV as she has the worst venous access going and she needed sedation to access her port.

Couldn't give it via the button as it was totally blocked.

Step up a very clever doctor. We were able to give a minute sized amount of solution orally (talking 1 ml) but it was the strength she would normally have.

Result!

After thirty minutes of giggles and I love yous from Sophie it had worked, and button was changed in less than a few minutes.

We had to hang around for longer than normal as the team on call didn't know Sophie and wanted to make sure she wasn't going to react in any way to the sedation.

On the way home, Sophie was going through the emotions of her sedation.
I call it her drunk-induced-emotional-outburst phase.
She covers every form of drunk person, from happy drunk to angry drunk to emotional drunk to violent drunk.

Well in this state, sat in her car seat in the back of the car, clutching on to an empty can of red bull she had found in the car, I happened to glance at her in the mirror. I looked at Ian who had clocked the same. If a police car had pulled along side us they would have thought we'd just picked her up after a night on the town. In the wrong light, the energy drinks can looked like beer and her face just screamed, look at me I'm sozzled.

Oh my. Another glimpse into the future me thinks.


At 5.30 am we finally arrived home, tired and I was due to start work at 8 for a 12 hour shift!!

Don't worry, I rang work and went in at 2pm after some sleep. Sophie finally fell asleep at about 8am so not much I may add!

That night was the dreaded turn back of the clocks. Days get shorter, nights get longer, however it meant we gained an extra hour of sleep so I was able to catch up before my next 12 hour shift on the Sunday.



Saturday night after I had finished work, we went to my dads house for fireworks. Sophie adores fireworks and isn't so keen on Halloween at the moment so we thought we'd let off some fireworks instead of the Halloween stuff.




We started off with this many...







Which increased to this many...







We all had some difficulty snapping the fireworks and this is the best effort we have.





Sophie loved it but we still have some left as she was totally exhausted from her adventure the previous night. It's bonfire night this week anyway so I'm sure we'll make good use of them!

That's all for now folks so take care and thank you for all the advice and comments. Will keep you all updated on the garlic.


x
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