Monday, 30 August 2010

Finally some physio !!!

Hi all

Soph spent the weekend with some cows. sheep and some pigs and riding on a train with her nan for a few hours! She also got up to lots of mischief with one of her friends including lots of fun on a trampoline.

When Sophie had her last admission, her physio gave us the RC Cornet for Sophie to try out to aid her chest physio. Sophie has never been keen on percussion at all. Infact we can only ever get a good session in if Soph is unwell as she specifically asks for us to 'pat her'.

Each day, twice, we are patient, try and usually fail to get the full session in.

Sophie is uber sensitive on her right side where her TOF repair scar is. She was cut open from the middle of her chest right round to the middle of her back so they could get through inbetween her ribs, move her little lung out of the way and do the life saving surgery that disconnected her oesophagus from her trachea and reconnect the two ends of her oesophagus.

Scary at the time, but it's amazing to think back to how her surgeon managed and succeeded in saving Sophies life at 36 hours old.

We are still in awe of the surgical team.

Ooh where was I?

Oh yes,the reason we think Soph is sensitive there is possibly habit as that area was very sore for a long time and maybe there is some nerve damage that heightens pain around the area. So any attempt at chest percussion usually fails.

Soooo, we tried Sophie with her Cornet in hospital and she HATED it, wouldn't even give it the time of day so we packed it up and brought it home to try again in the future.

Well, one day I happened to be messing around with Sophie singing songs and I got it back out and startd to blow it whilst marching about, and to my surprise, Sophie decided she wanted to have a go on the 'trumpet' as she affectionately calls it now.

We have never looked back since, she'll do blows on it throughout the day now and I now finally feel that she is getting some decent physio in everyday. She always is very active, blows bubbles, does bubble PEP and uses her trampoline and spacehopper, but the 'trumpet' is making her cough more than most activities which can only be good.

Here's a few photos of her in action (apologies the quality isn't great, was difficult keeping her to stay still as she likes to march about!!)



She's really quite proud of herself.





Still taking her time to get the technique quite right...






But...

Deep deep breath






and look at those cheeks puff as she puts in the effort..




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This photo is just abit random but any with Sophie looking happy around food is worth posting in my book.

Little miss hula hoop hands :)





Regarding my blog post, mum vs nurse, I have spoken to someone in the team who has taken on board everything I am feeling, I actually read her my blog post and then we chatted for a good half an hour. She is going to have a diplomatic word with the rest of the team and explain why I am the way I am :D

There is a feeling there that some of the team may feel abit anxious around me because I am a nurse, which I find amusing if I remove the way I am really feeling. It's been stressing me out and I don't know whether this is going to make things better or not.
She fully understands that I cant turn off the nurse in me and erase years of knowledge, it's impossible and i'd refuse to even attempt to.

Only time will tell I guess.

Back up to the hospital tomorrow for Sophie's cough swab but I think I have a few lying about the house somewhere so will try and get one before we leave to minimse the stress. I don't have any forms though so will still have to trek over there for fun if I can get one myself. Sophie has had a bit of a snotty nose and i'm wondering if a cold may be brewing, she was up in the early hours of the weekend asking her daddy to pull out the boogers up her nose! Bless!

Until then I hope everyone is doing well.

Take care

x

Thursday, 26 August 2010

Post clinic call

First of all, thank you so much for your detailed responses both on here and CF.com to my previous blog post. I feel better knowing I am not doing anything out of the ordinary. It's an issue that has been bubbling under the surface for a while now and I think I may have to speak to some of the team about the way certain people are making me feel. If I don't, it's only going to get more uncomfortable and become more of an issue which we could really do without.

Please feel free to continue to comment on this blog post i'm really interested in other peoples opinions on the subject.

Well today I received an unknown number call on my phone (precious iphone is back and better btw! :D). I answered swiftly as it usually means something Sophie related.

It was.

I knew it wasn't going to be something pleasant when I heard the adult CF nurse, who is standing in for Sophie's lovely CF nurse while she is on annual leave.

She mentioned Sophie's last clinic appointment and before she had chance to say, I asked what she had cultured. Anyone who lives with CF knows that the team don't generally ring for fun unless it is a courtesy call to see how things are or to phone about cultures!
Well other than the usual pseudomonas growth, which clearly has taken up full time residency Sophie has also cultured Haemophilus influenzae.

It shouldn't be a major issue though, so any family reading this, relax!

The treatment should have been augmentin duo, however Sophie has just finished a two week course of this due to the change in her cough a couple of weeks back. I'm glad I jumped on it now :)
Plan of action is to take Sophie up to the ward this Tuesday just to get a cough swab to see if the antibiotics have shifted it or not. The good news is her cough seems fine now and she's as bright as a button!


On the bowel front, we have managed to get Sophie to go poop once a day on her potty, which is fantastic news! Going to continue this current regime of laxatives for a week and then slowly reduce to try and get things abit firmer ;)


On that delightful note, I'll leave you with a picture of Sophie concentrating on sticking googly eyes onto some paper. If you remember back to earlier in the week, the one thing she was disappointed with on her 'shopping trip' AKA sedation day, was that the shop had sold out of googly eyes!

Well guess what? Her nan managed to find some!

Until then take care and Sophie's hair is getting more curly everyday if that is even possible!!




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Wednesday, 25 August 2010

Mum vs Nurse.

I will apologise in advance for this strangely profound blog, but I feel I need to get something out of my system and here is as good a place as any.

I know our blog is not known for being particularly emotive but from time to time it cannot be helped.

As some of you may be aware, professionally, my full time job, my vocation.

I'm a full time nurse.

I love my job, I'm good at my job, I have worked very hard to get to where I am. I work awful unsociable hours to guarantee that Sophie is always with Ian, her nan or I and never with strangers. I use all of my holiday entitlement when Sophie needs to be admitted.

However, I feel stuck in a very hostile area when it comes to Sophie's CF care. I just wish to clarify that I think Sophie's team are amazing and really do look after Sophie well.

First and foremost I am a mum, I have feelings, I am very emotional when it comes to my daughter.

You can appreciate that I understand medical terminology, I understand how the system works, I understand how the body works, I understand medication.

Cystic Fibrosis was a whole new ball game, I only knew the very basics but I have made it my business to learn as much about this beast. It's my nature, if I don't understand something, i'll learn about it until it sits comfortably in my mind that I 'get it'.

I ask questions when I don't fully understand why something has been prescribed or why a particular treatment has been sanctioned, or not. This is not to be awkward or obstreperous.

This is purely because I want the BEST for Sophie.

What I find particularly odd is that the majority of the above, all parents of children with health needs do.

Nothing to do with medical knowledge or being 'in the field'.

In the past I have backed off completely and just become mum, however this cost Sophie dearly. If I had fought a long time ago, Sophie would still be eating. If I had used my medical knowledge and made it known I was using my medical experience then maybe, just maybe, the junior doctors would have listened and not left her to wait for her surgeon to come back from his holidays to diagnose her reflux.

This is why I now question things I don't understand, I jump on infections and problems quickly.

The majority of the time this is fine and her team know that if I phone, something is genuinely wrong.

Recently I have realised this isn't the case with everyone.

With some people, I cant have these discussions about Sophie's care as I instantly sense the defensiveness before I even have chance to ask a question.

I actually don't ask a lot, I guess it is what I ask that is the problem. In no way am I trying to solely dictate Sophie's care but it is my right as a parent to question things if I don't agree/understand/or see it as unnecessary.

I feel I am sometimes dismissed, almost punished because of the job I do and I think this is completely unfair. Ultimately I have thick skin and can handle it, but why should Sophie potentially lose out?

I didn't ask to be in this position, it isn't my fault.

But, I am going to fight for my child to receive the best care regardless of who stands in the way.

Am I doing something that other parents don't do?

Am I over-stepping the boundary that exists between being a mum and being a nurse.
How can I switch off a whole part of me?

Should I have to?

Up until now, the two have co-existed rather well.

Tuesday, 24 August 2010

Following on from yesterday. Bowels.

That old chestnut again I hear?

Well yes i'm afraid so, it was only a matter of time before it reared its head again.


This time though things are somewhat different.

Following on from yesterdays blog, we made our way up to the outpatients department to see Sophie's CF consultant.

I'd frantically emailed Sophie's CF psychologist in the hope that she would be able to join us for some of yesterdays adventures. She couldn't make the morning installment but was able to meet us at ouptatients which I am very grateful for.

Sophie was still very much under the influence but able to function normally. We had to watch her like a hawk in the waiting room as there were other childrens clinics in progress. This meant lots of little people around for Sophie to 'accidentally' knock over.
We didn't have to wait long to be called through although we did have to fend off some nurses who were armed with equipment and insisted Sophie needed all her obs doing. I politely explained that Sophie was seen in full clinic last week and she was in no fit state at all to be having anything done to her.

They did oblige and backed off and we were lead to 'Sophie's clinic room' to wait for the Prof to appear.

Whilst waiting we did have a little fun making paper planes out of forms that were just sitting around in the room, begging to be made into something more creative ;)

Unfortunately as the door opened, I had launched one of our creations and it shot straight at Sophie's consultant. Luckily he does have a sense of humour otherwise we may have been told off!

No pussy footing around things, we got straight down to the knitty gritty and discussed Sophie's bowel problems. Her consultant is almost certain that her problems are non CF related but he is taking it seriously and wants to get things sorted out.

Sophie allowed him to examine her tummy and it is soft, pain free and palpable which is great news. He has decided that her problems are due to behaviour ie she has had a bad experience and the problems stem from there.
I agree with this as it all started on her last hospital admission. Sophie was only just properly potty trained before she was admitted and then she went through the trauma of her port op and then ivs. At some point during this time, she stopped pooping. Maybe she takes after me and cant go poop on any other toilet other than her own? :)

Anyway, this caused her to back up and then she did pass some really large constipated stools, which were obviously very painful. This is probably why she has been reluctant to even try and have a poop.

Back to the appointment, her consultant has decided to try her on two laxatives, one that will help shift stuff and one that will help her bowel contract properly.

Step up to the stage, picasulphate and movicol.

I was willing to try anything to get her empty and then to get her bowels regulated, and I know the picasulphate gave her tummy ache but that was on its own.

Basically there is no quick fix, we need to trial and error the dosage until we get Soph going once a day (even if it is just mush) and then we can gradually start weaning the laxatives off until hopefully she is back to soft formed stools, once a day.

This morning she took herself off to her potty and passed a large amount of loose stool, which she was so proud of. This is a good step forward as she was more than happy to go potty for a poop. We just need to empty out the tank completely and then we can start backing off with the dynamite to get things more firmer.

On a really bright note, her consultant emphasised how pleased the whole team were with her chest and anything else CF related and had nothing else he needed to add. Just to continue as we are. Fantastic!

In other news, I received the appointment date for meeting with Sophie's feeding psychologist and dietician to discuss the preparation for the tube wean. End of September so watch this space but the whole saga will be fully documented on feeding problems blog, our other blog.

Hopefully should have my iphone back soon so will be able to post a few more pictures!

Take care all
xx

Monday, 23 August 2010

Oh what fun we've had!

Sense the sarcasm much?

Note to self, ensure the prescription for sedation is done prior to the actual day it is needed.

Why I hear you ask?

Well, ward doctors don't actually like taking ownership of such details and using their ever expanding knowledge, or listening to staff that know the patient well and parents, namely me today.

Today the doctors decided that Sophie's dose of midazolam would be determined by her weight. Um okay.

This meant her dose was less than she has ever had, so consequently, it didn't work particularly well. Unbeknown to us, we didn't find this out until after the first port flush attempt when I just happened to mention that Sophie wasn't particularly sedated compared to normal.

So it was bounced back at the doctors and after MUCH deliberation they decided that it would be pointless to give the extra amount (which I totally agreed with) and they would try a different type that would be sure to work well. Colo something or other-never heard of it before.

Whilst we were waiting for the docs to decide their next battle plan, we were able to change Sophie's mic-key button relatively quickly. I showed the nurses how damaged the button was after just 3 months. They agreed it needed doing this regularly, which made me feel better and not like some psycho-obsessed parent who never agrees with anything!

Anyways back to the colo-whatsits-name, this didn't work particularly well either but the second attempt at the port flush was successful and the good news is, Bertie still bleeds back! Yay.
During the procedure there was a minor casualty though.

Me.

Sophie managed to do the biggest wee in history all over my lap, which the nurses and my mum in law found hilarious!

They did take pity on me as it looked like I had genuinely piddled myself and gave me a fetching pair of green scrub trousers. They really went well with my black heels!!

Anyways, moving on, Sophs xray was cancelled due to her being a little violent, the second lot of sedation sent her quite violent and aggressive, and the team have promised not to give it her again. Only one foot managed to hit my face though and no scratches or lacerations to anyone.

We had to hang around on the ward for a few hours as we couldn't see her CF consultant until 14.30 so we had to find ways of keeping Sophie amused in her raged state.

Thank goodness for ride in toy cars.

Yep we allowed Sophie to drive around the play room whilst under the influence. To be fair, her reaction skills were most impressive considering she had had enough sedation to knock a horse out!

The sedation seemed to peak and then wear off and then peak again, most bizarre, however she did calm down a little and we were able to make our way up to the outpatients department to see her consultant.

I will write about the bowel side tomorrow as I am extremely worn out but glad the day is nearly over.

Sophie is sleeping off the drugs and honestly I could join her!

Take care all

NB Just to add, Sophie has since woke up and has absolutely no recollection of todays events. She thinks that she has been shopping and had a lovely time! I wish I could say the same ;)

xxx

Sunday, 22 August 2010

Sophie's weekend with her nan...

Sophie's nanny and aunty have sent us a few pictures from their weekend adventures. Soph shot up to sunny Southport with her grandad, nanny, aunty and uncle for the day and spent Sunday at her nans. We've missed her lots!!

There will be some more when we've been sent them all.



Sophie's after the fat controller!!







Sophie happily destroying her sand castles. It's more fun crushing them than building, right?








I can cook! It still amazes me to see pictures of Sophie getting her hands so mucky. She had tactile defensiveness as part of her oral aversion and even the smallest amount of stuff on her hands used to set her off in a screaming fit.






Not just a fluke, she really is enjoying it!






**Wild hair alert**

Sophie viewing some more trains, she's seriously addicted and takes it all very seriously!








And finally, another picture of Soph eating ice cream in the car. If you don't understand and think that this is a totally normal thing for a child to be doing. Go and have a read of Sophs TOF/OA story! :)







Tomorrow is crazy procedure day so please send us some positive vibes as i'm sure it's going to take its toll on Sophie. Wish us luck!!

Take care and will update as soon as possible.

xx

Friday, 20 August 2010

Well this is going to be fun!

After trying out the picasulfate and having no joy except for Sophie developing bad gut ache, I phoned the team again yesterday.

The advice was to resort to plan A.

Movicol. Lots of Movicol.

4 Sachets to be precise and today we have actually seen her bottom produce something! Don't get too excited though as it looks like overflow only, but hey, it's a start!

I also got to arrange her port flush which will take place on Monday. We have to be at clinic for 10.30 for sedation and then the port flush will be done, closely followed by annual bloods, her mic-key button change and then off up to xray to get her lungs on film. Sophie has refrained from allowing them a public appearance for so long now, it's time for them to be thrust into the limelight and be seen in all their glory.

We will then have to hang around for a bit as her CF consultant wants to see us in afternoon clinic to try and sort out Sophie's bowel problems once and for all. This is great news, however I am not relishing the idea of amusing a drug-fuelled child for any length of time in an environment she isn't entirely fond of!

Sophie is off to the seaside for the day tomorrow with her nanny, which allows Ian and I some much needed time to get a few jobs sorted. As I work every weekend normally, it is hard to get big jobs around the house sorted as Ian cant be decorating etc with Soph about as it is calamitous to say the least!

Hope the weather improves though as currently it is pouring with rain. Again.

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Hope you all have a spiffingly good weekend and if you get a minute, please stop by Skye is the limit and send them some love, they have been having a really tough time of late and would appreciate your love and support.

Take care all.

xxx

Tuesday, 17 August 2010

Acceptance

Today was Sophie's Cf clinic appointment.

Ruth (psychologist) met us not long after we arrived in clinic to show Sophie what she had created. She now has a reward chart which has a train theme, she quite likes it.

For every procedure Sophie allows in clinic, she is allowed to move 'Thomas' one step along the chart. When she gets to the end of the track (this will take a few visits) she will receive a present. Sounds so simple yet so effective!

Sophie was quite unsettled initially but did soon settle down. We managed to get weight done-15.8kgs and height-93cm. Sophie also allowed the doctor to listen to her chest, which sounds clear. The only thing we had problems with was her cough swab!! The one thing she has always done with ease. She happily had the stick in her mouth but under no circumstances was she going to cough!!

We managed to get a few more photographs for her book also.

I was able to have a very long chat with one of Sophie's doctors. We went into a separate room and I was able to look at all of Sophie's swab results aswell as xrays etc
We discussed pseudomonas in great length and I almost accept that Sophie is going to culture this indefinately. I say almost as I have a few reservations but for now I will keep them between myself and her team. We discussed all possible long term treatments and have decided to stick with the current regime, for now I am happy with this. The plan for scheduled IV's is still a little unclear until discussed with Sophs CF prof. It is looking likely that we will do them once a year unless Sophie's lungs dictate any different.
On a positive note, the pseudo is still fully sensitive and currently non-mucoid and the whole team think her lungs are very healthy currently.

Other issues discussed were Sophs bowels, she's still having some trouble, so the decision has been made for her to stop movicol and have once weekly doses of picasulphate(spl?), liquid dynamite for those that don't know it!
The plan is to kick start the bowels into functioning back at Sophs normal level. Her doctor doesn't really want her on long term laxatives unless absolutely necessary so is trying everything to get things moving effectively.

Sophie's port flush is due next week, oh the joys!!

So, we are planning to make use of the sedation and get annual bloods, a chest xray and port flush all done on the same day. We just don't know when exactly this is all happening!!

Sophie is continuing on her augmentin duo for a further week, just to make sure all has cleared up fully, but in herself she seems back to normal.

I am absolutely exhausted, it's been a long day as Ann and myself met with the commissioners from the PCT this afternoon. This was in relation to feeding problems in children and lack of services.
Keep watching here for any further news.

Until then I will bid you all good night and thanks for all the lovely comments.

Take care everyone

xxx

Monday, 16 August 2010

This is a surprise!!

The lovely Gem has awarded us our very first blog award! Totally shocked but very very pleased and quite humbled.

The rules say I have to link to the person who has awarded it, so above is the link to Gems blog Just my cup of tea AKA Small and Smiley. It's well worth going and having a read, she's had a tough time of late with her own health, but manages to stay positive and funny. She's also very open and honest which makes her blog so good!

Here it is!!




****
1. Post the award onto your blog.
2. Link the person who has given you this award.
3. Pass the award to 15 other fab blogs you've discovered.
4. Let these 15 people know that you've given them this award.
**** (I cant get this to sit in the middle so given up!!)

Sooooooo, i've had the really difficult task of deciding which blogs I want to give this award to and after much deliberation and in no particular order here we go. I have chosen the blogs I am currently checking on daily...


Worth his salt

Phoenix's fight

Me, myself and I (and CF)

Lovin lane

Nathans fight

Live, laugh, love

Breezy's bravery

A Day in the life of a CF mom

Skye is the limit

Our journey--65 red roses

A cure for lil Chris

it's a wonderful life

Groettum family

Life as a mum to 2 children with CF

and I know she has just awarded me mine but i'm sending one right back at her!

Just my cup of tea

I hope you will all stop by the blogs I have given the award to.

Thanks again and enjoy spreading the love.

xxxx

Prelude.

It is now the eve of CF clinic (well will be later on!), the appointment has been brought forward to 10.15, which is actually fine by me as I have a meeting with a few important persons regarding the feeding clinic (keep watching feeding problems blog in link list for developments).

My mum is coming to clinic with us as Ian has to work. I have a feeling i'm going to come out of there upset.

We will see.

Sophie appears to be responding well to the oral antibiotics, she is still clearing loads of mucous, but her cough is actually sounding more dry and is less frequent so great news.
She was able to go to the train fair with her dad, she loved it! She came home with her very first electric train set.

I know she's not very girly.

She just loves trains so much though, she has a number of Thomas the tank engine sets but they are all battery powered.

This is her first real set.

I'd love to include some pictures of her with it but my iphone is poorly :(
It's currently in the hands of the Apple geeks who are hopefully repairing it! Both mine and Ians phones decided to get sick at the same time so we are both without. Honestly, I never thought I would miss a phone so much, it's pathetic, but unless you have experienced having one, don't judge ;)

I don't have much else to add until tomorrow.

Send us some positive vibes that clinic goes well and we don't get any more bad news.

Take care all

xxx

Friday, 13 August 2010

Staying in the warm...

Cant believe I'm actually saying that in August!

Yes, sunny old England has really outdone itself this time. It's absolutely freezing here today! Wind, rain and general chilliness. It's fine though, it's only SUMMER after all!!!

Sophie is still coughing abit but seems a little brighter in herself. She's two days into her antibiotics now with review on Tuesday at clinic.

The old poop problem has returned for a cameo appearance. We had to back off with the movicol due to its explosive nature and to give Sophie's bottom a rest. Consequently, she has started to bung up again but it's only been about 3 days, so we started with 1 movicol every other day and increased to 2 sachets per day. Now it's pouring out!

I feel it is going to take a wee while to find the right balance for her. Every other night just isn't enough, but anything more seems too much. Bless her, she's actually sitting back on her potty again now and quite proud of what she is producing.

We cancelled the visit with Ruth (psychologist) due to Sophie's free flow bowels and general 'not quite right-ness'. We will see her on Tuesday at clinic anyway. She says she has been working on a few things to help Sophie accept more procedures in clinic. Again I am intrigued!

Until next week I have little else to say. Sophie is off to a train fair on Sunday with her dad if she is feeling better. She absolutely LOVES trains and I really hope she's feeling better by then.

Until then, take care everyone and all those in hospital please get yourselves home soon.

xxx

Wednesday, 11 August 2010

Cough Cough Cough.

Since Sunday/Monday, Sophie has had an increase in her coughing. I have purposely left it for a few days just to see if anything was developing, and also wondering whether I was noticing something that wasn't there, due to knowing she had pseudo lurking.

However, something is definately going on. Sophie always has a cough that sounds like croupe, this is because she has scar tissue in her trachea from her TOF surgery. When air passes along her trachea, it causes the weak area to vibrate as it is quite floppy and in turn, Sophie produces the loudest sounding cough you have ever heard. This cough is very distinctive and crisp in sound, and it's usually a change to this cough that first alerts us that something sinister is brewing.

She's starting to cough at night which isn't normal, she's got a very junky sounding cough in the morning and is cough, cough, coughing throughout the day. She's also producing huge amounts of sputum but this remains clear in colour. The only other changes to her baseline are that she is sleeping a little more than usual.

I text her CF nurse earlier to see whether we should treat or hang on until clinic on Tuesday. She has promptly phoned me back and we are going to try some Augmentin duo until Tuesday, and possibly switch at clinic if things aren't improving. She will also courtesy call us on Firday to see how she is before the weekend.

I cant grumble though as Sophie has remained so well since November and her ivs in between have been to try and eradicate pseudo and also cover for when her port was fitted.

I just have a feeling ivs could be looming.

I hope I am wrong though and this is just a viral thing that'll pass quite quickly. She's well in her self otherwise.

We are seeing Ruth on Friday for more 'playtime' in outpatients so will fill you all in on what we get up to this week.

I hope everyone else is doing okay at the moment and again, love to all those struggling.

xxx

Monday, 9 August 2010

Memory lane.

When I dropped Sophie off at nursery today, she followed me out of her room to wave at me from the window. As she walked through, I noticed how big she was compared to the children in the room she had not long moved out of.

She has come on so far from the 2.25kg (4lb,13oz) she weighed when born at 35 weeks. It took us over a year to actually get Sophie to put on weight due to severe reflux so it is a miracle she is almost on par with her peers.

Anyways, will leave you with a few pics of Sophie over the last three years.



The first is of Sophie when she had been 'downgraded' from intensive care to high dependency a week after her TOF repair. Her jaundice had almost settled down at this point.




This second picture is quite emotional for us, it's one of the last oral feeds she had before her oral aversion kicked in and she decided she wasn't going to have anything by mouth again.





This picture is of Sophie in her bumbo chair, which was a lifesaver with her reflux.





This was Sophie's first holiday, she spent the whole time on the beach with her hands and feet out of the sand. This was due to tactile defensiveness, which is related to having an oral aversion.





This final picture was taken at a friends wedding, Sophie couldn't get enough of the confetti!




Take care all

xxx

Friday, 6 August 2010

Play time part 3!

Well today we met at outpatients with Sophie's psychologist Ruth and Jo was also there. Sophie was a little reluctant to go to hospital today but I think it was partly due to her trip for her abdominal xray and also her port flush attempts.
Once there though she soon settled into playing...








This second picture shows the 'magic' box that Jo always brings with her and Sophie loves it! It contains allsorts of toys and surprises and houses the whoopie cushion that got Sophie to sit on the scales for the first time in months and months.









We didn't do much more today than the previous visit, although Sophie was able to go straight to 'her' room in the department where all her clinic visits will be and also asked to go to the 'other' room, where she led us to the weighing and height measuring room. Impressive!

The main point of today was more exposure for Sophie in the department and also to try and get a few more photos for her book. We were given a draft copy of it today and I must say it is fab! And Sophie absolutely loves it!!

I cant show you most of it as it contains pics of a lot of her team but here is the front of it. Any questions about its content then let me know.






Regarding our old nemesis pseudo, we have decided we want something doing about it or at least proof that she is colonised. The only way I can see that happening is via a bronchoscopy. I have agreed with Sophs amazing CF nurse to wait until we are at clinic next, which is a week and a half away.

For those that dont know her history, Sophie first cultured pseudo when she was only 6 months old, had ivs and a course of ciprofloxacin and colomycin nebs and it stayed away for approx 13 months. She cultured again and had ivs and then didn't show any signs for a further year. This time round, she cultured the end of last year and had ivs and then it continued to show on and off in her swabs over the space of about 4 months. After ivs in February, she hasn't cultured it again until now (5-6 months)-sparse growth and it is sensitive to antibiotics. We never took Sophie off the colomycin nebs so she has been on them since she was 6 months old. The only other Cf medication she has is pulmozyme once daily.

The odds don't look good about it being a random growth now BUT either way, we want to be proactive and not reactive in treatment. We want to give her the best shot we possibly can and we wont rest until we are satisfied this is what is happening. Don't get me wrong, her team are awesome and we have a lot of trust in them so we will wait until clinic and then quetion question question.

Until then I wish you all well and many many thanks for all of your responses. experiences and advice it really is appreciated.


xxxx

Thursday, 5 August 2010

Pseudomonas.

Urgh, got the dreaded call from Sophs lovely CF nurse earlier today. Well I actually missed the call and she left an answerphone message saying she had results and would phone later. Totally unusual so I knew something had grown.

I rang her straight away and received the news we had delayed for quite a few months now, the pseudo was back and this time she thinks it may be time to face the fact that Sophie is probably colonised :(

Stubbourn as I am, after mulling it over all day at work I think I may want to treat it with some orals. The problem we have is the only oral it's sensitive to is ciprofloxacin, and this turns Sophie into a monster for the duration, but I dont know whether I can just sit back and wait for this to flare up only. Sophie has colomycin nebbed anyway so she is covered and she is currently very well.

Whether it is denial on my part I dont know but i'm only prepared to accept she is colonised if it is proven via a bronchoscopy, this is another area we may be exploring in the near future.

Now we have to make decisions as to how we are going to play this. We are at clinic in a few weeks and I will be discussing what iv regime we will be doing ie how regular are we planning to do maintainence ivs. Sophie has her port now and in the past, her pseudo growths usually get kicked in the ass with a good blast of ivs.

Decisions. Does anyone have any advice, experience, suggestions?

On a bright note, Sophie's annual faecal elastase results are in and her numbers are greater than 500, woohoo, pancreas is still functioning normally so for now, we don't have this to worry about.

I'll update after our psychologist meeting tomorrow and on any decisions we make.

I'll leave you with a pic of Sophie completely oblivious to her mummy and daddys stresses...

Take care all

xxx

Wednesday, 4 August 2010

Just incase you hadn't noticed...

I have added a quick poll onto the blog and also a guestbook so please don't be shy! ;)

We have had to slow down Sophie's movicol as she appears to be beyond empty! She's having a day off from it and it also means she can go and have some fun with her nan instead of worrying she'll get in a mess due to lack of control. Poor little mite has had a bit of a horrid time but she's completely back to her normal, chatty, bossy self!

Sophie's CF psychologist emailed me earlier to say that Sophie's book (the one they have made showing positive experiences in the hospital setting) is nearly done and we should be able to have a draft copy when we meet on Friday. They just need a few more pictures to finish it off.

Just a short blog today as I have an enormous amount of cleaning to be getting on with. Cant wait to see it, curiosity has gotten the better of me!!!

Take care all

xx

Monday, 2 August 2010

Rumble in the jungle.

Well well well, it appears Sophie's bowels haven't actually hibernated after all.
The movicol is working and working well.

We haven't seen anything that resembles constipated stool since she started what can only be described as a militant regime, however, she is being cleared out.
Everyday she is producing some very 'funky' stuff and her tummy is slowly looking less bloated.
I can only imagine how uncomfortable she must have felt but she never showed it until the last day or so. The noises her tummy are making are quite remarkable and very musical at times. Her bottom has also turned into tornado alley and i'm surprised she's managing to stay grounded at times!

All humour aside, i'm just relieved we have solved this latest problem with ease. Sophie also went back to nursery today as she had missed it so much, she loves spending time with her friends. Even though she is only there 3 hours three times per week she manages to get so much out of it.

I had an appointment with Sophie's GP to do her annual prescription review today. I always find these appointments amusing as the GP is just the 'money man' in this scenario. The CF team dictate Sophie's medication and his role is to just write the prescriptions and fund it.
I had a brief chat about how she was as he very rarely sees her and he checked that her repeat prescriptions were up to date. I also asked him if he would prescribe Sophie some regular movicol as per CF team instructions. He obliged, but when I mentioned the team would like her ideally to have two sachets per day until we find the balance Sophie needs, I noticed the look of horror on his face. He said he'd prescribe one per day for now as he felt that two would be a little strong for her. I did mention that she is currently taking six a day and she still isn't totally clear yet but he was not going to budge. It's no big issue though as the team can communicate with him if they really want two a day.
After picking up Sophie's monthly prescriptions (the pharmacist had managed to lose the original prescriptions and had to print off some more, which I got the gp to sign whilst I was in with him) I left and dropped them in at our pharmacy. I did well today as the only item I have to go back for is her colomycin nebs, which should be delivered Wednesday.


We are meeting up with Sophie's CF psychologist on Friday to continue working on her PMTS. We will be targeting the outpatients department again and Friday afternoons are pretty quiet so there shouldn't be too many other children about for Sophie to terrorise with her squeals.

Until then I will bid you all good night and hope everyone and your little people are well.

xxx
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