After surgery

Lots of checking by various nurses & basically keeping her on maxim drugs (morphine & paracetamol) seems to be the way to go for us. She is very distressed if she wakes & a couple of times its been quite awful steadying her & the some of the attachments have got lost or tangled in the struggle. The arterial line is the one to always keep attached!

A couple of people 'in on her surgery' came fairly quickly and then one of the Surgeons, Professor Hayward, came to let us know it all went very well, as expected and as it should gave done. This is good to hear.

Her eyes are swollen shut though. I knew this might happen. They were literally blue (eyelids) and now worse & purple. We've been warned that the swelling comes out over time so this is likely to get even worse, better, worse & then better again and then fine in the end.

Hubby went home about 8 and I got the chair sorted for me to sleep & I was pleased to find it goes flat. I have tried to sleep but the smaller baby next to us wouldn't settle & then Kate was sick at 10.30pm Bless her. She hasn't even had any food or drink yet, though I've tried to offer her some milk.

I changed her nappy as we were disturbing her anyway. Then she had another little episode where she tried to turn over & I had to get a nurse to help me.

Kate's now snoring & it appears everyone but the nurses and I are asleep.

Post surgery

We were called to come to Recovery about 2.40pm and, if possible, bring her dummy! I took it to mean she was crying & didn't want to get lost so went straight up to Koala ward to get a nurse to take us there.

I could hear her as we walked into the room & I quickly bypassed all the others & practically grabbed her from the nurse who was trying to comfort her. It wasn't easy with all the tubes & lines & I tried to get her thumb in for comfort. She quickly fell asleep again when she realised it was me. Her eyes were closed & blue with bruising and her whole head looks swollen. She's bandaged as expected.

That bit was horrible, seeing her in distress & looking bruised & her cry sounded very hoarse.

We followed as they wheeled her gently to Koala Ward (high dependency/intensive care) where the nurses sorted out her tubes and lines & connected her to an ECG.

Nurses keep popping by to check on her & explain things to us. One seems to be stationed with us, I think until the Dr has been to check her over properly. We also await seeing a or the surgeon(s) to find how the actual surgery went.

Morning of surgery, Weds 17th April

We got up at 5.20am & were on the 6.11 train to London Bridge. Kate woke when I put her in her pushchair & had a sip of water just before her 6.30 cut-off.

The journey was fine, and she waved to everyone & said morning. We could see all the barriers & marshals waiting to close the roads at 7.30 for Margaret Thatcher's funeral all around St Paul's Cathedral.

On arriving at Dinosaur ward we went into the main waiting area this time that was filling up with families with kids if all ages waiting for surgery. There are plenty of toys Kate likes & she's had a fun time playing & drawing etc and only a couple of screams while nurses did checks.

Surgeon answered a few questions I had. They will overcompensate her correction as she's still growing.

Dr Britto was stuck in the diversion at 8am & we've been told by one of the anaesthetists that we are 3rd in the list so we're waiting & playing & all thirsty & hungry now!

I can tell when it's almost time as I've seen a few kids get into gowns & the disappear off!

Literally 5 mins later we were 'gown & down', well actually up.

Kate walked herself down the corridor, sometimes running to the theatre. She was suspicious of the nurses and anaethesist and I had to hold her flailing & fighting with the gas until it worked. It doesn't take more than 30 seconds but enough to make her whole fighting body go red! We laid her on the bed, I gave her a big kids & left her with Nikki's pink rabbit my sister had bought her when she was born.

We were shown to Koala ward & ushered to go out and busy ourselves! It's about 10.30am. If we'd hadn't been taken straight away by the nurse I'm sure I'd have broken down.

We're now in the Lagoon cafe watching Margaret Thatchers funeral with tea!

We'd don't expect to hear anything until 4ish so I won't expect to be posting any more until then.

All set for tomorrow, I think!

Short Story: 

I got the call from the ward about 4ish to say we need to be in for 7.30am tomorrow at Great Ormond Street, that Kate must have no food or milk from 2.30am and only water up to 6.30am.  We think we'll make it, even with our bus from London Bridge on diversion due to Margaret Thatcher's state funeral tomorrow.

Nikki I left settled at my Mums and Kate had her bath and hair wash, as instructed, and has gone to bed on time at 7.30pm.


Long Story:  Kate is having left orbital remodelling surgery tomorrow, Weds 17th April for coronal craniosynostosis at Great Ormond Street Hospital, London.  She is now 18 months old.

I took Kate to play at the Phonenix Centre in Wallington which has a bouncy castle, soft shapes to climb on and castle with slide, as I figured she won't be doing rough & tumble play for a while after the op.  She loves it there anyway and our normal singing class wasn't on today anyway.  She learnt to jump on her own on the castle, a little, for the first time.  She fell asleep on the way back, which was my plan, and allowed me to pack her, my bags and sort out Nikki's things.

She woke after a long while, probably catching up from having us up in the night quite a bit last night, and started saying, "Deedee a soool".  Nikki's at school!  This she repeated over and over and she tried to make me go and get Nikki by getting her shoes and trying to prise the front door open, bless her.

After enjoying getting Nikki from school and a sunny walk home, we had dinner and then packed up the car to take Nikki to Granny's for her 3 days of sleep-over.

Kate making Nikki laugh by poking her finger up her nose!

The hospital rung to confirm we should arrive at 7.30am and fasting 6 hrs before, with water up to 6.30am.  Nikki, doesn't yet know it will actually be 4 days of sleepovers, and maybe 5, and that day 4 will be a sleepover at my sisters, with her cousins who she adores.

Just before I left Nikki she asked to take Kate round the garden in the electric jeep.  They love doing that :)

A brief goodbye for both Kate and I from Nikki and she was off for another spin! Nikki is excited about her sleepovers and was confident in saying, "I know. I'm 5 now", about anything we tried to show her.  She took her doll, Lydia, and her box of things; bandages, blood, oxygen, ECG and heart monitor etc to show Granny properly with the story book showing what will happen to Kate and her recovery.

Back to home and Daddy had come home from work.  We bathed Kate and washed her hair.  She peed on our bedroom floor (Daddy was drying her hair without a nappy on!) so she went back in the bath and then had her milk & went to bed as normal.

Now for dinner, some TV, last minute packing and early bed for us and that's it for today.   I'm feeling ok.  Thanks for all the well-wishes and apologies if you only get a short reply, as I'm getting many, many in all different formats.

I will try to update the blog if I can, when I can over the next few days too.

General up-date - 2 days to surgery

On Friday I had an emotional morning.  I've no idea why, I just woke up feeling worried.  Sick with worry and a bit tearful.   I warned the friends we were meeting that I was feeling a bit 'wobbly' and that I didn't want to discuss Kate's surgery at all.   I cried in the car all the way there, and I think that got it out of my system.  

We had a lovely day, and I went out with other girlfriends in the evening which was really great too.

Over the weekend we saw both sets of grandparents and I showed my Mum Nikki's school things and talked a bit about her school routine. I've emailed my Mum, who will mainly be looking after Nikki & taking and collecting her from school, all the information I think she needs so she can refer to it.   

Our friend who used to be a play specialist at Great Ormond Street came over with a box of things for Nikki.  This included a doll with a 'special' haircut and stitches over her head, cannula in her hand, a toy doctors set and even a toy heart monitor, ECG machine and more.  

She'd made her a story book with pictures of the doll. This showed the various stages Kate may go through after the operation, with different tubes and attachments, showing her being given blood and medicine through the cannula, bandages on her head and even sore eyes.  

Nikki named the doll Lydia.  They played at the table with all this and went through the 'doll's' story and helped bandage her, give her medicine and blood, monitor her heart etc.  

We then got the blood out of the packet onto a tray, which was like half-set jelly and played with this, happy and sad faces and paints.

This was brilliant for her, and after dinner Nikki showed Daddy it all and what happens to Lydia in hospital and took her to bed with her to look after her.  

Today Kate got me up early which meant there was no real rush for getting back into the school run after Easter & it all went smoothly.  Nikki didn't complain and I left her there quite happy.  I'm just hoping NOT to get a phone call today because that could be moving the surgery date again!  We are due a call tomorrow evening to talk about timings of coming in on Weds and fasting. 

A main concern now is actually getting to Great Ormond Street Hospital now, as Margaret Thatcher's state funeral will mean our bus will be on diversion & could delay our journey.

Pre-Operation Assessment etc 9th April 2013

Kate's pre-op Short Story:

Pre-op was booked from 1pm and took all afternoon. We went up early to make sure we were there on time and to have lunch first.

It all went as I expected really.  There was quite a bit of waiting around, discussions about the actual surgery, risks, recovery, consent form and photos of Kate's head taken at various angles in a studio setting.  The nurse explained that her CT Scan had been reviewed and showed full fusion of the coronal suture and that everything else is ok - they look at the whole head/brain etc by the sounds of it.  Even though she'd had 'magic cream', by the time they were ready to do swabs for MRSA and take blood the nurse through it was better for Mum to take Nikki away - Kate really can scream and really doesn't like nurses now!

The worst thing about today was hearing that her scar will be from ear to ear, right across the top of her head.  I had imagined it would only be half-head.

The best thing was that she's not bothered by the plaster/dressing on her hand.  Hopefully that means she won't try to rip the turban-like bandages off her head after the op!

Kate's date for Coronal Craniosynostosis - frontal orbital remodelling surgery is still 17th April at the moment, next Weds.



Kate's Pre-Op - the Long Story - for those who like the detail and anybody going through this that might like to know.  Kate will be 18 months by the time of her op next week!

Our friend who used to be a play specialist at Great Ormond Street Hospital (GOSH) thought it was a good idea and I thought it might be good for Nikki to come.  So I asked my Mum to come to help me today with taking the two to London.  Not knowing what was going to happen or how Kate would react to anything today I couldn't have done it on my own.  It was the right decision for us I feel.

We left early (10am train) with the intention of having a play in Coram Fields or the Activity Room if it was too rainy and lunch before the appointment at 1pm.  The journey was fine, though Nikki was a bit moody as she's had lots of late nights in the school holidays (she is only just 5).

 Playing at Coram Fields

In the entrance Nikki asked why a girl she'd seen had no arms.  I said that lots of children come to this hospital with all kinds of problems to be helped or fixed and that Ceri on CBeebies only has one arm and she's fine.  That was the end of it.

We found the lunch hall (Lagoon Restaurant), had lunch courtesy of my Mum and then went to find the ward.  The restaurant is very reasonably priced with various options from sandwiches & salad to hot meals and snacks.

We arrived on Dinosaur Ward and the girls got to play and draw for a bit while we waited. Then I got some forms to complete.  Kate was even unhappy about having the magic cream and plaster put on her hand and foot (to numb the area for the needle for blood-taking).  It takes a while to work so we went up a floor to Photography to have the 'before' photos of Kate taken.

Another play area and short wait was good for Nikki and Kate, as it was very hot on Dinosaur Ward and they had been running around.  The photography area is like a studio with big lights, black backdrop and props.  We easily manipulated Kate's poses with noisy toys, so the man snapped away and it was done quickly.

Back on Dinosaur Ward we saw a man who will be in on Kate's surgery (can't remember his title but not an actual surgeon) who advised of all the risks again to do with surgery and I signed the consent form.  This is when I asked about her scar and he said it will be from ear to ear, right across the top of her head and his gesture to show why made my stomach turn.  I had imagined it would only be half-head and don't really want to know any more about the actual surgery!

Then we saw the nurse who explained about what happens before and after, what to bring in and more about her recovery.   Mum went off to get hot water to make up Kate's milk as I could tell she was beginning to want it and the lady explained that they had reviewed her CT Scan from yesterday this morning.   That it is a full fusion of the coronal suture and that everything else is ok and normal.  I didn't know they looked at anything else, but it makes sense I suppose and it was good to hear.  I also asked her about hearing issues and she said there's not normally problems with hearing. Kate seems fine so that's something for me not to worry about.

Nikki was lying on the bed, being very sleepy and not really paying attention so that was also good.  Then the lady came to take Kate's blood and the nurse suggested my Mum take Nikki out - that was a good idea!!  Kate screamed and fought, even though she'd had plenty of time for the magic cream to work, and her vein was good so they got it on first attempt from her hand.  (Her foot was creamed to give a second option, just in case!)

The lady gave me a form about surgery day and the call we should expect about fasting the night before and we left.

The bus and train journey home were uneventful as Kate slept nearly the whole way.  Nikki fell asleep for a few minutes on the bus and then my Mum bought her magazines to keep her happy the rest of the journey home.

I am actually really glad to have a break now until surgery.  Fingers crossed it can go ahead on Weds 17th as we'll have to go back and do bloods & some pre-op stuff again if it gets delayed again!

CT Scan day - 8th April 2013

The short story:  

Kate went a bit crazy on the ward whilst waiting for her sedation and CT scan because she was nil by mouth from 4 hours before.  That's the period she'd have normally had milk, breakfast and probably a snack.  Then she fell asleep.

She woke 5 mins before the sedation time and and refused to go to sleep on the mediation.  My kid can't be sedated!! She flailed in my arms for a very long time.  In the end I had to take her away, feed her up and run her about in the park and returned with her in a natural sleep & we managed to do it.

It made it a very long and exhausting day for me!


The long story: for those who like the detail and anybody going through this that might like to know - and this is probably about as bad as it gets when it comes to a sedation and CT scan!! Kate is 17 months old at this time.

Husband & I got up about 6am & I woke Kate at 6.30 with a small amount of milk, exactly 4 hours pre-sedation time. That's the latest she could have ANYTHING pre-sedation.  We left on the 6.47 train from our local station to London Bridge & then got a bus to Holborn & walked a few mins to Great Ormond Street Hospital (GOSH).  This is the first time I'd actually been into GOSH, as previous appointments had been next door.

Hubby had come to make sure I got there ok, and we arrived about 8.05, early for our 8.30 check-in.  He left us to go on to his office in Victoria.  By the time I'd actually got to the right place in the hospital, we were probably just on time.

Within moments of being on the ward, Kate became restless due to her hunger. She was not at all happy to be weighed, 11.4 kg, have her temperature, heart rate and blood pressure measured. She made this well-known!

She then went into a major hissy fit, throwing herself around, pushing me away and even thrashed out to smash the toys in the playroom she was offered. She banged her head a couple of times and rushed into the corridor a few times to make sure everyone knew she was not happy.  Hungry, hungry, hungry.  Nothing could be done, her sedation was booked for 10.30 and Scan 11am.

Luckily, it wasn't that long before she fell into an exhausted sleep on my lap whilst I sang her nursery rhymes and at 9.15 I transferred her to her pushchair, asked for a cup of tea & wrote notes up to here!

 

At 10am a friendly SHO came to do Kate's patient assessment and consent forms with me and told me more about the sedation and what to expect before and after.  She said to be warned that some kids fight the medication though many just fall asleep quietly. I also learnt that the CT Scan is really a multiple number of X-rays that will show in detail the bones.  She did her checks of Kate whilst she was still asleep & left.

At 10.25 Kate woke up and seemed reasonably happy, considering she must have been starving still. She waved to people as she does, as we went down to the sedation & CT scan area.

Two CT ladies popped in to check Kate's details & the nurse told them to give us 15 mins.  She turned down most of the lights. I looked at the clock in the room & it was 10.50.  The nurse handed me a big syringe of honey-coloured liquid and said it's better if the mother does it and warned me that it's quite runny, not thick like Calpol!  We lost a little bit to the floor & my knees but she took most of it & the nurse said that was fine.  To start with she did seem subdued, but then she started squirming and fussing and for quite a lot of the time screamed and fought me as much as she could under sedation.  I couldn't let go of her as her legs didn't work!  After a while of fighting her trying to push me off and getting really worked up I asked the nurse how long this normally takes and she said some take 40 mins.  After a bit longer I asked her if it ever 'not' works and she said, "Sometimes, well only once since I've been doing this, and that's 2 years".

I decided the clock couldn't have been working as it then said 12.05 and the CT ladies had been in several times to see if she was ready.  I couldn't see my watch or phone to see what the real time was, as I had to hang onto Kate.  She was throwing squirming and thrusting moves and it seemed an age, and I should have gone to the toilet before we went down! Eventually the CT ladies suggested taking her in to the scan room as it's also quite dark & quiet.   They got me to try lying her down on the 'bed' but that didn't go at all well & then they suggested another 10 mins in the other waiting room.  When she still hadn't gone to sleep they said they'd have to try this afternoon.  That's IF they could fit her in and IF she was to be asleep naturally.   I got to the toilet finally and realised it was gone 1pm when I came out of the hospital so I think that clock had been right!

NOTE : I have since found out this is called an Adverse Reaction and it happens more often than I was led to believe

I had doubts, considering her earlier sleep & sedation medication, that she would sleep at all for the rest of the day.  It would have been a wasted trip without trying, so I took it as an opportunity to go and explore Coram Fields, the play area/park almost behind the hospital.

First, a quick lunch for me, at Brunswick shopping centre and I got a bargain lunch that was lovely.
Coram Fields is more concrete than I'd expected, though the grass areas seemed to be being re-seeded and not accessible.  There's plenty of play equipment, sand and chickens, rabbits etc to see too.  Kate loved it and I did my best to wear her out and feed her up to make her sleepy!

I headed back about 2.50pm as I had to be back by 3pm. I did all my tricks to get her off & she just fell asleep on the ward and they rang down to say we were back and we were told to go straight down to scanning.

Half-a-long-hour passed waiting in the scan area reception, but in the end we managed to do it.  I even got her coat and cardigan off because both have a hood - that's a good tip for CT Scans - no hoddies!

I stayed with Kate for the scan, which meant wearing some heavy overall and neck-thing. I've found out this is filled with lead to absorb any wandering X-rays, though I wonder why Kate didn't have one on her body!  It didn't wake her as it sounds a bit like a washing machine, not like an MRI that I've had which is extremely noisy.

Example, not my picture obviously!

It was done.  Simple as that.  Kate woke up just after, as we were putting her coat back on, and I immediately went into my journey home to avoid rush hour.  She was good as gold, considering everything.   I had a 15 mins walk to avoid the steps at our local station on my return and then went straight to collect Nikki from my sisters.  There her husband made me a cuppa I was dying for.  My sister was then at work, and I returned to unpack Nikki's things, and make pancakes before bed with her.

Exhausted. At least I know my route for tomorrow, and Nikki and my Mum are coming too for the pre-op appointment, which will make things different.  I will be looking forward to a break before going back again for the op!