Friday, 30 July 2010

Operation evacuation!

Last night the poop saga reached a climax. We ended up at Sophie's CF hospital.

**warning** The following post contains graphic details of poo **warning**

After numerous phonecalls this week and an increase in laxatives, Soph still hadn't passed anything more than a small ball of poop and loose mush in 16 days. So the team decided she finally needed examining.
Once there, a doctor tried to have a good feel of her tummy, which Sophie was a little bemused about to say the least!

It was decided she needed an abdominal xray, but with Sophie being Sophie, this wasn't going to be done without sedation. Cue the midazolam.
We were moved round to Sophie's CF ward and to more familiar surroundings and faces. Once there, Sophie was given the midazolam and Xray department were warned that she'd be there in about 10 minutes. Once in her system off we walked in force (2 parents, 1 nurse, 1 health care support worker and 1 student nurse) up to Xray.

We were greeted by 2 radiographers who before we could say not to, told Sophie she was going to have her 'picture' taken. Sophie hates this phrase and associates it with chest xrays.
Luckily, Sophie was in happy midazolam land so didn't pay much attention. The Xray was taken with ease much to everyones surprise and off we went back to the ward to wait for the doctor.
While waiting for the results, one doctor was able to have a good feel of her tummy and also listen for bowel sounds.

After a short wait with Ian and I trying to amuse a very happy, wobbly Sophie, the doctor came to deliver the verdict. He said Sophie was basically full of poo, end to end, but no blockage or partial blockage so we were free to come home with a faecal evacuation regime of movicol. 38 sachets to be precise over 7 days if needed!

Sophie has managed a very tiny rabbit-like dropping but is mainly passing overflow currently and loads of stinky gas but hoping an arrival is due soon!

Once we finally get her cleared, she will be having prophylactic movicol to prevent this happening again in the future.

We also went to see Sophie's feeding psychologist today, more can be read about this on http://willmychildevereat.blogspot.com/.

Considering how uncomfortable she must be feeling, Sophie is in a really lovely mood and as active as ever. I will let you all know if 'anything' happens!

Take care
x

Tuesday, 27 July 2010

The poop saga continues.

Hi all

Sophie is still not pooping! It's been 14 days since her last large formed poop. Oddly though, Sophie is in no discomfort, and is an absolute pleasure to be around, which raises the strange question. Is she really blocked up?

As Sophie is solely tube fed, in the past when her milk has needed increasing she stops pooping-obviously. However she is gaining weight, infact she's a little on the chubby side at the moment so we are not convinced it is that.

We have had her laxatives increased and there definately appears to be some movement in the form of little skid patches (sorry abit TMI!)and very small rabbit like droppings. As Sophie is pancreatic sufficient, bowel issues are very very new to us.

Anybody pancreatic sufficient out there suffer with constipation like this?

As of today, Sophs laxatives have been increased further in the hope we get a longed for explosion! It wont be pretty but it will be very very welcome.

In other news we see Sophies feeding psychologist on Friday, these appointments are always great and i'm hoping we may begin to discuss the possibility of moving onto the next stage and discuss tube weaning Sophie. This will be a huge step forward as currently Sophie doesn't experience hunger. She doesn't associate that rumbling feeling we all experience when hungry and know that if we indulge ourselves with wonderful food that feeling disappears.
In Sophies world, being hungry causes her upset as she doesn't know how to deal with it. In the past when she had her PEG tube, she has grabbed my hand and pointed to her PEG and then pointed to her milk. This isn't 'normal' but Sophie knows no different.

I hope that we can continue to move forward with Sophie's eating and finally get her to start enjoying food once and for all.

From a chest point of view, Sophie is still very well and we are just waiting to see if her last cough swab is negative. Fingers crossed!! She still continues on her nebbed colomycin and DNAse.

Look after yourselves

xx

Friday, 23 July 2010

Bertie got his drink!

Well today was round two of port flush. I am currently working nights so Ian took Sophie today.
He managed to get her emla cream on this morning and off they went to the hospital.
It was decided that Sophie would have midazolam (sedation) prior to Bertie (the port) being flushed. This was administered via her mic-key button not long after she arrived on the ward. Sophie has had this quite a few times before for various procedures so Ian knew exactly how she would behave and when it would be the right moment for the port to be flushed. Sophie gets very happy on this drug, giggly and almost like she is drunk.

Once the drug was given it didn't take too long to start working and after about 10 minutes Ian told the nurses he felt it was time.

Sophie sat on her dads lap, her CF nurse crouched in front of them and the other nurse stood to the side stroking her hair. Sophie was a little unsure to start with and did start to cry but as soon as the port was accessed she stopped and allowed her nurse to flush the line with saline and heparin. Job done!

Sophie apparantly wouldn't remember any of this but she has happily told me all the details and is very calm about the whole situation. She has told me all about 'Bertie' having a drink and everybody she has seen today. I was worried this way would make it worse for her but it was exactly the RIGHT way to do it.

On the plus side, it has solved the button change dilemma as this is going to be how her port is flushed monthly for a little while so I can do her button change at the same time as her port flushes, result!

In other news Sophie is still struggling with her bowels so her CF nurse has upped her laxative dose until we get things moving properly. It's not that she is totally blocked as there is some movement it just is nowhere near enough. She is still averaging only going once a week or sometimes longer.
Hopefully once we get this sorted out she can just get on with enjoying her life!

I hope everyone is well and it is so nice to blog about something positive for once!!

Take care all

xx

Tuesday, 20 July 2010

So fed up.

Well today was the day of Sophies port flush and CF clinic appointment. Ian and I managed to get Sophies emla cream and dressing on with very little trouble and off we went to the hospital.

We met Sophs psychologist at the ward and went into one of the empty bays. When Sophies nurse came in, she sensed something was up and began getting twitchy. After playing and making friends, we all decided to just go for it. Sophie was actually not too bad having the dressing off and the area cleaned but the moment her nurse tried to grip the port, she freaked out BIG STYLE. It became an impossible task for her nurse who tried her hardest but the needle must have hit the side of the port in the struggle and got bent.

Attempt number two had the exact same problem due to Soph thrashing around. Her nurse was very apologetic but it was in no way her fault. It doesn't help that Sophie is quite chunky and her port is well padded.
We phoned up to clinic and we are going to re-attempt on Friday and due to how upset Sophie was and how exhausted we were, clinic will be rearranged also. We did manage to get a cough swab from Sophie though and home we came.

I'm just sooooooo fed up, firstly because I haven't been able to sort out her button changes and secondly because I cant ever see us being able to get the port flushed without sedation. Sophs CF nurse is going to have a think between now and friday as to what the plan of action is going to be. Ideally she'd like to avoid sedation if possible but obviously the port needs flushing and if it isn't possible then sedation may be our only option for now.

Does anyone else have this much trouble?

I just feel so deflated and exhausted over it all, i'm sick of having to fight all the time, i'm sick of having to restrain my child all the time.
I'm scared all the work we have done over the last few months will be undone by something that only takes a few minutes. We know the emla cream had worked as she wasn't any more vocal with the needle going in than she was with the nurse just cleaning the area.

I guess we just have to see how Friday goes and see what they decide, quite frankly i'm not even going fight either way re-sedation. I'm worn out emotionally.

x

Friday, 16 July 2010

The calm before the storm?

Hello all

Just a quick mini update before clinic next week.
We appear to have Sophies constipation under control, which means it was hopefully related to the heat we have been experiencing over the last few weeks. Sophie is back to her usual happy self now and back enjoying nursery.

Sophies lovely CF nurse sent us some emla cream and some dressings through the post ready for her dreaded port flush on Tuesday. The plan is for us to put the emla on when we leave and then to go straight to her CF ward to have the flush done there. If for any reason Sophie freaks out at the emla and dressing then we are to remove it to limit any more trauma. If this happens i'm not sure what the back up plan actually is!!

If the flush goes well and Sophie isn't too upset we will then travel up to the outpatients department to have the rest of her CF clinic appointment and see how things are chest-wise. This is also where I will be begging the team to help us sort out the ongoing saga of her button changes once and for all. Please send lots of postive vibes our way next week!

On a brighter note, Sophie seems really very well at the moment and i'm so hoping her cough swab next week is still clear of pseudomonas.

In other news, we had our meet up for our feeding support group this week and was really really pleased with the amount of people that showed. It was lovely to meet up with other people going through the same problems and totally understand what you are going through. You can read more about it on the feeding problems blog willmychildevereat (on my links list).

Please send some positive thoughts to an American friend of mine Suzanne, she has a daughter with CF also and is one of the nicest people I know. She's had quite a tough time lately with her own personal health and I wish her the speediest of recoveries. Sending you much love!

Take care everyone

xx

Monday, 12 July 2010

Nothing is ever easy!!

Well following on from my strangely cryptic last post, here lies the problem.

Sophie has a mic-key button (gastrostomy held in place by a water filled balloon). This is how ALL of her nutrition gets in. When her surgeon placed it we were told it must be changed 3 monthly, the reason for this is she is quite acidic in her tum tum and if the balloon were to rupture and the tract heal over, due to her extensive surgery re-siting would be somewhat of a challenge.

Problem is, this surgeon is miles and miles away at a hospital Sophie doesn't really attend anymore as she only sees her CF team now. Due to her PMTS, it is near impossible to change her button while she is fully awake as she tenses her stomach so much and also causes her to have even more issues with any procedures.

We were advised by a gastro nurse specialist that Sophie needs mild sedation for her button changes which we totally agree with. Sophies balloon ruptures at approximately 3 months due to wear on the balloon (it turns black and you can see the little holes that have caused it to burst when it falls out). Up until now, Sophie has been due anaesthetics for lines etc at the same time as her button has been due its change, so it normally senses what is happening and bursts just as she is going into theatre (weird but true).

All sounds fine and straightforward?

I have been trying to organise the next change which is due in about a month but I have since been told by the gastro nurse that Mic-key buttons can stay in up to 9 months now. After explaining the situation to her FOUR times she is adamant that she isnt going to change it, quoting cost of the button to me. While I understand from a general perspective this may be the case this one-size-fits-all mentality doesn't fit Sophie.
Cost isnt an issue as her buttons are nothing to do with this particular hospitals funds and when the funding was sorted after her initial operation, Sophie was allocated up to 1 button a month if needed(we never request this many though).

I have spoken to the manufacturers and they have said in some cases they can stay in until 9 months, but the decision must come from the specialist on a case by case basis as everybody is different.

I have spoken to the surgeons secretary this morning who wasn't entirely useful as she said I needed to get the gastro team at the CF hospital to write to the surgeon rquesting this information. This isn't going to happen as
1) Sophie isnt actually under the gastro team here.
2) The gastro nurse in question has changed the buttons as a favour in the past and doesn't know Sophie at all.
3) There is absolutely no way she is going to go back on what she has said about the 9 month thing.

I wouldnt mind but I am fully trained to change her button, I just cant get hold of the sedation needed as it is a controlled drug and Soph does need monitoring briefly afterwards. As her CF team have handed it to this gastro nurse, they cant help either as this isn't their speciality.

Havent had a conflict of specialities like this since Soph was about a month old when her oesophagus closed back up (very long story).

I have no idea what we are going to do. We can ride it out and when the balloon ruptures(because it will) travel the hour and a half round trip to her hospital in the hope someone is able to pop it back in with sedation before the tract closes or try and get it in ourselves risking making her issues much worse and Sophie losing any trust in us.

I wouldnt mind if it was just there for top ups but this is currently the only way she gets feed and fluids.

Aaaarrrgggh, i've found a lovely wall with my heads name on it, please excuse me for a moment while I go and bang against it.

Sorry for the outburst, so fed up of simple things being so difficult.

x

Friday, 9 July 2010

Play time part 2 and a poop update.

Today we spent day 2 in outpatients having lots more fun. Following on from Tuesday, Sophie happily had her height done several times measuring in at 92cm, and also sat on the scales without the help of the whoopie cushion. Sounds really trivial but I honestly cannot emphasise how big of a breakthrough this is.

We also got Soph to lie on the couch in the department and she even let us listen to her chest-this is HUGE. The plan now is for Sophie to always use the same room at clinic appointments so she has a 'safe' environment. We are totally avoiding all rooms where she has had negative experiences, i'm really happy with this.

Port flush in a week and a half, the first one and i'm not really looking forward to it. I hope Soph proves me wrong.

In other news the lactulose is helping, very small progress but things are moving and we haven't had a repeat of last weeks potty screaming. So far so good though...

I have a few things to sort next week, Sophies nursery have annoyed Ian and I immensely but I haven't decided yet whether i'm going to blog about it. I'll see after Monday. I also need to phone Sophies surgeon at the other hospital to ask him to write a letter to the gastro team at her CF cetre. This is to do with her mic-key button changes. If I get the results I want, i'll fill you all in next week.

Sorry the last part of this blog is covered in mystery! Hopefully all will be revealed soon, as that will mean it is all sorted, otherwise my head may just actually explode.

Look after yourselves

xxxx

Wednesday, 7 July 2010

Constipation.

Sophie has been having a slight problem in the bowel department since she came out of hospital a few weeks back. It could be related to one of two things, or even both.
The poor little mite has been screaming on her potty and then passing poop the length of her leg and quite hard!

I rang her CF nurse who has kindly gotten a prescription sorted for some lactulose and senna. I'm happy giving the lactulose but not so keen on the senna as I know the bowel can get a little too used to it. (it's the nurse in me, did I mention i'm a nurse?!) Anyway, i'm going to just try her on the lactulose for now and see how we go.

It's a tricky one as i'm not sure if she's bunged up due to the heat and being dry. As Sophie doesn't take anything significantly by mouth due to her oral aversion, she doesn't demand drink when she is thirsty. We have upped her water via her button but she cant tolerate huge amounts in her stomach so it has been hard. The other cause could be her sticky CF mucous. However as Sophie isn't pancreatic insufficient this side of CF is very new to us. Either way she needed some 'assistance' and that is what we have sorted for her.

I'll keep you all posted on how things 'develop'. Any tips would be fantastic!

I hope everyone is well.

xx

Tuesday, 6 July 2010

Play time in the outpatients department!

Well this afternoon, Sophie and I met with her CF psychologist Ruth and her assistant Jo. The purpose of this meeting was to work on Sophies PMTS (Paediatric medical traumatic stress) within the outpatients department. This is the place where Sophie has alot of anxiety and it causes allsorts of problems everytime we have a CF appointment.

Sophie gets so worked up at clinic appointments that she wont let the nurses weigh, or measure her height, she wont let the doctors listen to her chest and the whole appointment is full of lots of screaming and crying-exhausting!

Well today we took some polystyrene planes which Sophie loves and built them in the waiting area. Once built, we then proceeded to fly them along the corridors of outpatients-lots of fun! We got alot of funny looks from some of the doctors but Sophie did allow a few nurses to play with her which was a HUGE breakthrough. Ruth took lots of photographs as the whole aim is to create a book for Sophie of pictures of all the areas of the hospital that she visits. The pictures will be of Sophie having fun in those areas in the hope it will trigger positive emotions and memories rather than negative ones. We did similar in the ward setting which worked wonderfully and it is mainly the reason we got home to finish her ivs.

We had a major breakthrough today, we managed to get Sophies height done by pretending to let her squash us into bricks with the machine. Sophie eventually allowed us to do the same to her and we got her first actual height in two and a half years!!! Go Sophie. We also managed to get her onto the sitting scales by putting a whoopie cushion on it and then Sophie obviously had to squash it with her bottom. Sounds absolutely crazy but it worked! We also had such a good laugh.

We are all meeting up again on Friday this week to work on more of the same. I cant thank Ruth enough as she is working so hard on getting Sophie to accept the hospital setting and we are seeing results really quickly. Instead of Sophie screaming in the car on the way to the hospital, she's actually telling me to get there quickly so she can go and fly planes with Ruth.

We still have a really long way to go but things are going in the right direction now. Sophie will have to have 'Bertie' (her port) flushed every month and this is something that isn't going to be easy. We also have to get her to accept chest xrays as this is another area where we are having major problems.

On the whole though, really positive day and I have a really happy little girl who didn't want to leave the clinic today! Bizarre.

Hope all your little ones are well.

Gemma x

Monday, 5 July 2010

Where to start...

I thought I would start a blog related to Sophies Cystic Fibrosis. I already have a joint blog, highlighting the troubles Sophie experiences regarding her TOF problems. They can be found by clicking on the link 'feeding problems blog' or just ask away.

May 2007

Sophie was already in hospital recovering from hours of major surgery after having her TOF/OA repaired.

This was Sophie at 3 days old.




We had a lovely doctor meet us at the door one morning to say that they had had some results from the guthrie test. Sophie had Cystic Fibrosis, she was 3 weeks old.

Our world felt like it was caving in, we thought we were going to lose her during the surgery she had had(7-8 hours), but she came through it after battling sepsis and a respiratory arrest when they attempted to wean her off the ventilator. Here both Ian and I were faced with a whole new demon and Sophies fate was sealed. A life time of medication and hospital stays.

To say we were heartbroken was an understatement, but things would improve. Sophie is pancreatic sufficient and this means she doesn't need to take any enzymes to help her gain weight. This may not last forever but it currently means she doesn't struggle to gain weight and this gives her a good buffer when she gets a chest infection.

Fast forward to July 2010

Sophie is now 3 years of age, she still isn't eating due to horrendous reflux caused by her TOF (see other blog) and is fed via a mic-key button mainly but is taking more and more orally. She has recently had a port fitted as her veins play hide and seek and after 3 admissions for IV antibiotics which have caused her to develop paediatric medical traumatic stress (PMTS)(basically has heightened stress responses to anything medically related), the port was the way forward and we have recently completed our first set of home ivs. Sophie has cultured pseudomonas on and off since 6 months of age but we managed to get rid of it for 14 months. Recently it returned again but she has had 2 clear swabs to date. Sophie currently takes colomycin twice daily and pulmozyme once daily medication-wise and has twice daily chest physio.

I will leave you with a recent picture of Sophie, taken after a very long jumping session on her trampoline which she loves. She had her port accessed at the time and was having home ivs.

Take care all x


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