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Monday, November 22, 2004

 

day 5 - parp 2, 1st day back at work, pseudo bath

Parp 2 - the revenge
Todays events start with a bang, well a 'parp' same as yesterday. Nuff said on that one but it set everyone up right for the day. At least it happened while I was at home to help out.

Work
Got home and the day had gone as well as could be expected. My wife had done various bits of jobs and pottering about to keep things moving and everyone distracted enough not to get bored.

Pseudo bath
We had the idea of letting her have a bit of a splash with some bath toys in the sink. She was wrapped up in 2 double folded towels from the bust down to keep everything dry, quite restricting but it did the job.
I sat on the corner of the bath with her on my knee and she had a splash in the sink with some of her toys and thoroughly enjoyed it! A good idea I think as long as we keep everything else dry.

Sunday, November 21, 2004

 

day 4 - parp!

Nothing to report during the previous night time.

Day time went kinda OK so I ventured out on my own to try and get a few jobs done. When I returned it was bedlam!

Parp!
She'd had an occurance of 'loose stools' that was quite a nightmare to sort out. We attempted to get the bulk of it out of the way with the regular wet wipes including pushing them down and around the legs, chest and back. We even had a long skewer type thing with a wipe on the end to try and scoop out those difficult places. There was lots of crying as she was on her front and we had to scrape out up her back.

We got a light mixture of water & washing up liquid and try to remove everything from the outside of the cast with an old toothbrush without getting anything wet but it was pretty engrained and it didn't make that much differnce.

The inside of the cast is a soft fabric so this absorbed some of the moisture unfortunately and this was never going to come out.

We got rid of everything we could using up almost a full packet of wipes but sadly it wasn't everything. We coated what skin we could reach in a mild barrier cream (Sudocrem) to try and prevent skin problems too.

You can probably guess the ongoing implications of this event.

Thinking about it
Well, I suppose no matter how much padding you put in there with nappies and liners the stuffs got to go somewhere and it will find a way. Maybe not having so much padding would be a good thing as at least there would be somewhere for 'it' to rest.

Saturday, November 20, 2004

 

day 3 - Shopping

Again, reasonable night although I think the more extensive sleeping in the daytime is making her wake during the night and early in the morning. We seem to be reverting back similar to what she was like as a newborn but with the desire (and frustration) to do things that just aren't possible, such as sit up, crawl, walk, etc.

Shopping
We decide to venture out shopping in the high street but this proved to be a stressful affair. We got there, she was put in her pushchair OK and all seemed fine. We went into the bustle of people and then "oh dear! Wide load coming through!", The angle of her legs was causing them to stick out making her very wide, which caused problems navigating through a crowd of people without someone catching a leg. This in itself made us almost give up but then we tried a shop and it was just simply too difficult to get her between the aisles without catching her.
We ended up with one of us waiting outside the shop with her while the other went in to do the shopping. Less than ideal really and I don't think we'll be doing this much!

Friday, November 19, 2004

 

day 2 - car seat changes, appetite & hair wash

Again, the night went OK. Nothing out of the ordinary there.

Car Seat

We started out with the intention of venturing out into the world today in the car. This was partly born out of our dislike at the way that she perched on top of the car seat and the way that it didn't fit 100% securely into our car. So we went to visit our local travel shop 'The Journey Centre' to try out some seats to find a better solution.

After testing out the few that looked like they may be OK we settled on the Britax Elite as she seemed to fit much better in there with some cushion support. It wasn't quite as simple as just taking it away as we had to order an extended crotch strap and had to sign waivers based on the modification this meant to the seat. We would have to come back the following week to collect the modified seat and sign the waiver.

Appetite
Now I'm guessing but I suspect that her appetite has dropped off for one reason or another and she's got a bit of a runny nose. Guessing that this is to do with the cast fitting.

Hair Washing
This went quite well and was done by one person. She was held over the sink with her face up and her hair washed in a regular kinda way. Reasonably easy except for man-handling a struggling 10Kg baby in a massive cumbersome cast.

Thursday, November 18, 2004

 

day 1 - all fine

Writing this in hindsight but I recall that the 1st night was pretty much OK. Nothing to worry about really, she was comfortable, no problems. We were worried about her waking up soaked 'cos we'd not set her nappy correctly but it appeared to be fine.

She'd had quite a bit of sleep and her appetite seemed OK as well. Again, all pretty much as normal. We wrestled with her high chair and managed to get here into her original one by kinda hooking the fully casted leg through the front opening, then her other leg through the side bar so she was sat at a very slight angle but nothing uncomfortable. We packed her up with cushions to support her and she seemed happy.
The highchair table was a good place to put toys as usual but swinging arms soon sent those flying! Good to see her back on form.

The rest of the 1st fully day went OK too but we we're all getting pretty tired. I'm guessing this was more down to novelty and the fact that I'd taken a day off work so both parents were on hand and we didn't get too worried about her not having a full bath.

Wednesday, November 17, 2004

 

discharged & 1st car seat

Having been checked over, everything appeared to be OK so we we're discharged and free to go home. It was a good job really as she was starting to get tired again, as usual, so a ride in the car was going to be a good opportunity.

This was to be the 1st time we'd used the car seat too. We spent a good 5 mins propping her up with various pillows squeezed and pushed into various shapes to try and give support all along her back and also to support both legs, which were both hanging over the front corners of the car seat.

We were quite worried about her non-plastered leg as it was left to dangle by default and this was obviously going to place pressure on the backs of her knees and calf where it rested on the pot/seat. We used her fleece bobble hat to prop up her leg slightly and her leg rested on that as well. Worked out kinda alright.

The carseat itself had been modified by it's previous owner to include a long crotch strap from Britax, which was required now. Again, thank goodness we'd come prepared.

She did seem mighty strange kinda layed there at 45degrees perched across the carseat and didn't really look comfy at all, well, not as comfy as usual. She must have been comfy enough though as she soon fell asleep.

 

O.T.

A nurse from OT came and gave us some information on things like lifting, turning, changing, washing, seating, car seats, etc. and we came away with another couple of things to read.

Amazingly, the lady we'd seen the month before had again covered most of this.

 

cast nurse

The 'cast nurse' popped by and did the following:
* Cast needed trimming, edges lining with water resistant tape & some 'mole skin' for extra softness.
* Checked for cast rubbing around the edges.

She also advised on general cast care and we were handed some leaflets. The bulk of our chat was about the lady we'd met prior to our visit to hospital as she was working with this nurse to produce more information. It appeared we'd come well informed, which was nice.

Things like: nappys, keeping it clean, keep it dry, etc. All good stuff.

 

quick checks

A variety of nurses came by and checked various bits & bobs making sure she was OK. She needed to stop in the ward for a while to make sure she was OK.

* Circulation was OK. Toes were nice & pink. A quick test was to press a toe to make it go white on the end and then ensure it goes pink again within a few seconds.
* Made sure she wasn't sick after the anaesthetic. She had something to drink & eat and wasn't sick, so that was good.

We had to wait for visits from the 'cast nurse' to check that over and 'O.T.' to go over general care.

 

she's awake!

A nurse came to say she was waking up so we dashed in to see her in the recovery room. She was laid on a trolley bed slightly inclined covered in blankets up to the chest. A nurse was with her, watching her vital signs (heart rate, etc.) just to be sure. We went to the side of the bed but she was still fast asleep. We thought she would have also been very tired having been awake from 05:30 till 08:30 when she was originally put under. We sat and talked to her, hoping she'd wake up. A mask of oxygen was placed near to her face as that the pure air would help to flush out any residual gases that were still in here system.

While she was asleep we pulled back the covers and took a first glimpse at the cast, which we'd kinda got used to the idea of by now but it was still quite a shock to see that it was actually there. It was also bright pink!

It took a good 15mins or so before she fully came round and we soon picked her up for a cuddle. She was moaning but not crying but she seemed pretty much the same as if she'd been woken up when she falls asleep in her car seat. We carried her through to the small ward and placed her in bed.

 

recovery

The anaesthetist returned to tell us she was out of surgery and was in recovery and they'd let us know the point at which she was waking up. This was a big relief to know she was out and things had gone well. We still had to wait though and we couldn't see her.

 

down to theatre

I was escorted into the pre-theatre area by the nurse and I sat there with her in my arms. I sat and held her in my arms while a mask was placed over her face to give her a general anaesthetic. It was difficult and upsetting for both of us as I had to restrain her hands to prevent her removing the mask whilst trying to calm her as she was put to sleep . This experience was over in under 10 seconds, but seemed to last a lifetime. I placed her on the bed and the theatre staff took over from there. .

She was to be down in surgery for about 1hr so we went for some breakfast mainly to pass the time and keep ourselves occupied but we were back and waiting within 15 minutes, wanting to be there incase there was news of any sort.

 

getting some background

The anaesthetist came and asked questions about how she was feeling, if she was well, general things really and we had to fill out some forms with lots of details about recent & family history. This was presumably to head off any potential problems during surgery. We were told that she'd also be receiving some pain killers during the op. so that they would be fully working when she waked up afterwards to remove any pain.
 

the arrival at the hospital

We arrived at the day care area of the hospital for 07:30 not quite knowing what to expect. We were taken in and shown a cot in the ward for her to reside in afterwards. We took the opportunity to allow her to walk/cruise/shuffle/play/crawl about as much as possible as we knew it was about to be taken away.

She had some local anesthetic put on the back of both hands incase she needed to have any needles inserted at a later time.

She was weighed and measured. Guessing this was so they knew how much anesthetic she'd need.

She was due in surgery at 08:30 so we played and waited.

 

the early bird...

This is written sometime after the event so I can look back without a cloud of emotion covering everything. I'll skip the emotional aspect as I don't think it's possible to convey just how bad this was.

05:30
We started out at about 05:30 not really having much sleep the night before due to worrying. We'd also been told it was 'nil by mouth' but she was allowed a drink of water / dilute juice at 05:30 - so we did just that.


Friday, November 05, 2004

 

The date

We were given the 17th November 2004 as the date that she was to go into the cast.

Friday, October 22, 2004

 

More specialised consultation

We really wanted to know what was happening as my daughter was on the brink of learning to walk and this would only mean more frustration later. Every day counted as far as we were concerned.

At this time we decided to request a private consultation with the areas top paediatric orthopaedic specialist at the Sheffield Children's Hospital (SCH). He confirmed what the local consultant had found and we decided to be referred to the SCH as they obviously had vastly more experience in dealing with this particular complaint.

The cast was to be fully down her left leg right to the toes, across the abdomen just above her tummy and down to just above her right knee with a cross-brace from right-knee to left ankle. There was to be an opening around the crotch for nappies and such.

Saturday, October 16, 2004

 

cushions, cushions and more cushions!

Wow! Cushions! Apparently we'll need lots of cushions. Cushions to build seats with. Cushions to build up car seats. Cushions to rest on. Cushions to prop legs. Cushions to lay on. Cushions!

Needless to say, we bought some more cushions!

 

Sleeping

Sleeping wasn't going to be straight forwards either as her legs would need constant support to prevent her pelvis from tilting during the 8hrs of sleep. The obvious choice was a 'V' pillow that was setup to just sit under her legs giving some nice comfy support while she slept on her back.
 

Seating

A couple of main points. Seating was going to be a problem and this extended to things such as eating in high-chairs, shopping trollies and just generally sitting down.
We'd been tipped off about a high-chair and the person we knew had a good idea of using a travel chair that was made out of fabric and had an inflatable base that attached to regular adult chairs by means of straps. So, we bought one of these.
 

Car Seat & Push chair

Car Seat
We were told we'd need a car seat that had a flat base to sit on so that her spread apart legs wouldn't be too much of a problem. We'd also need one with a very long crotch strap as when she was bolstered by cushions she'd sit quite high in the chair.

The person we knew had a Britax Club Class Extra with a Britax extended crotch strap (available by contacting Britax directly) and searching the net seemed to confirm that this was a good choice so we agreed to swap our Britax Eclipse for the Club Class the week before her cast was due to be setup.

A caveat to this would be that it really does depend how the cast is set so there were no guarantees other than that our original carseat was 100% *not* going to work.

Push chair
We've got a classic umbrella folding Mclaren buggy and it would seem to be just the ticket with it's soft sides. We'd need to pad out with cushions but it should be fine.


 

Cast Care / Nappies

It would seem that cast care, and more specifically keeping it clean & dry were of paramount importance.
We took advice from various sources and found the following out to be a good first guess on what kind of nappies to use.
From the outside>In we had:
1) The biggest ActiveFit nappies we could buy to go around the outside of the cast and keep everything in place
2a) At night time only, some terry nappy liners. Kinda like a massive sanitary towel.
2b) Some 'Dr. White' sanitary towels, the ones that fit onto some kinda of belt

So, I was guessing that this would all seem like a good idea and it all makes sense.

We were warned that the cast will end up smelling as there will be a point over the 6 week gaps where wee / poo will get onto the cast and it won't come off. This can also lead to skin infections as the skin inside the cast can't be cleaned! A double whammy!
 

A special visitor

We were lucky enough to know someone indirectly who's 2 daughters had sadly gone through this but from an earlier age.

She kindly came and spent an evening with us telling us about what to expect, about car-seats, cast care, everything else really. This was brilliant and really helped us get to grips with what was likely to happen.

We were also informed that the cast would be changed every 6 weeks to compensate for growth and to re-assess how the treatment is working.

This lady is working with the Sheffield Children's Hospital on putting together some information to give to parents of children with this condition so that they have some kind of idea about what to expect.

I can only wonder about how terrible it must be for people who don't know anyone with such a problem and what a shock it would be on the day of the 1st cast .

Thursday, October 14, 2004

 
More formal confirmation
We were then referred to our local hospital orthopedics consultant and received an appointment for 4 weeks later, about early October. The doctor visually checked my daughter by manipulating both her legs presumably feeling for the 'click' of 'clicky hips' but found nothing. Luckily he sent her for an x-ray of the pelvis and when that came back it was obvious to even an untrained eye that the left hip cup wasn't as 'cupped' as the right hip. This was apparently down to the cup not forming correctly and it needed to be addressed. This can be know as forms of 'clicky hips', DDH, CDH, etc.

It was explained that she would need to be in cast for up to 9 months but that this would be reviewed during that time. Unfortunately, or fortunately as I'll explain later, the local consultant was to be on holiday for the next week or so, so we were kinda left dangling not knowing what was happening. Needless to say, we were very upset by this and the upset stayed for a good few days afterwards.

There was no advice given so I started 'googling' for any information I could turn up on the subject. I first started with these sites:
www.hip-baby.org a mainly U.S. site

www.steps-charity.org.uk a UK charity, including hints and forums.

Saturday, September 04, 2004

 
1st indiciations
In early September 2004 my daugter had her routine 9 month assesment by a health visitor and there was an indiciation that something wasn't quite right with her hips as the visitor had found "mis-aligned creases" in her legs. Whatever that specifically means but apparently it's some indicator they look for.

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