Tuesday 30 April 2013

Day 11 & 12 post-op - I've got ill :(


Kate's swelling is mostly just affecting her head and forehead now.  Even though she slept all night in her cot, she looked much the same in the evening as the morning, with just slight dark patches under her eyes.
Day 11 Post-Op - Mon 29th April 2013

But, this is where I've gone downhill.  I started the day fine but by lunchtime I'd come over incredibly tired and then by 4pm I was shivering under a blanket at my Mum's.   Looking after Kate & Nikki and giving them tea was a struggle.  Daddy didn't get home until bedtime and took over to do that for me, and I went to bed early on ibuprofen with aching limbs, head, neck and eyes like flu.

Kate had a bad night - one good, one bad continues - and spent about 2 hours in our bed and I was awake for most of the night shivering, only going back to sleep on the sofa after a lemsip at 5am.  We managed the school run ok as the drugs are pretty good these days!

My mum is going to have Kate from lunchtime so I can sleep.  (Tues 30th) I think I'm just exhausted.


Tues 30th, 12 Days post-op






Day 10 post-op Sunday 28th April

Kate is looking almost normal, just slight darkness under her eyes today. There's still swelling to her head/forehead.

Morning - Sun 28th

Evening - Sun

Sunday 28 April 2013

Day 9 Post-Op (Sat 27th April)

I will just post photo's now for comparison unless there's any other news.

Saturday Morning

Saturday evening

Day 8 Post-op (Fri 26th April)

School run - morning 

Dinner time
Kate has basically returned to her normal self, eating, running about and getting into everything!  Her swelling continues overnight to the point of affecting her eyes quite a bit sometimes.  We are getting one good night followed one bad night still at the moment.  Hubby has resorted to alternate nights mostly spent on the sofa!

I'm trying to find out from other Mums on forums whose kids have had this surgery how long this eye-swelling might last.  I'm also noticing, in the photos, that she looks like she's got a squint (one eye turned in) which we were hoping the operation would prevent.  We knew this was still a possible future problem even with the surgery but I was optimistic that this wouldn't be the case for her as her asymmetry was slight.  I'm hoping when swelling reduces (her head and forehead are always pretty swollen still at the moment) that it will settle down.

We have an appointment with the original Ophthalmologist we were under locally, the one that referred us to Great Ormond Street, in June so I can ask their opinion then.  Our first appointment post-op at GOSH came in the post and is 1st August 2013.


Friday 26 April 2013

Day 7 Post-Op - Thurs 25th April 2013

Kate slept all night after having Ibuprofen at midnight.  This meant I felt more human but more swelling overnight for her again. Both eyelids very puffy and only slits of eye visible.


We had a better day mood-wise and friends after school for a play in the garden and tea.  We gave her another bath to wash her scar at bedtime and you can see how her eyes had opened up again during the day.  I haven't mentioned how the dip above her left (looking at her, her right) eyebrow has definitely gone though, to me, she seems to have a bit of a lump in the middle of her forehead. Hopefully this is just swelling that will go.  She definitely looks different to me.


The bruising is going yellow/brown so it's not so noticeable as the heavy purple it was when we got home on Sunday.

Wednesday 24 April 2013

Day 6 Post-op & Scar pics

We had a very bad night with Kate waking only an hour after we'd given her paracetamol.

She didn't seem to want to be flat & I sat up with her for ages in our bed, and every time I tried to get comfortable or she slipped down a bit she cried and fussed.  Eventually at 4am I brought her downstairs where she asked for TV and played a little.  About 7am I put her in her pushchair in front of the TV so she could go back to sleep but still be more upright. Nikki got up and came down and woke her up.  I shouted at Nikki, and both ended up crying :(

Daddy gave them both some chocolate balls for breakfast that dissipated it!

Her eyes look better than yesterday but her forehead and head seemed more swollen to me.  Maybe that's why she wasn't happy in the night.

Morning day 6 post-op

I realised I haven't tried to picture her scar, as it's so well hidden by her hair, so today I took these. It goes in a zig zag from her ear, in a loop around her crown and back down to the other ear.





We got to school on time and then friends came to visit and she just wasn't happy. She moaned and clung a lot to me.   She eventually went to sleep after two attempts at taking her round the block in her pushchair.

I'd kept on with alternating paracetamol & ibuprofen today but she woke after her sleep & was still not very happy.   After the school Nikki and Kate played in the garden with their tea-set and were OK for a while.  Then Grandma came to see us and she was clingy again, but perked up after eating a reasonable dinner.  
Dinner time - Day 6 post-op
She also ate fruit & pudding today, so a full dinner, but hardly drank any bedtime milk.  Tonight, we'll wake her and give her ibuprofen at midnight.  That is supposed to help with the swelling so fingers crossed for a better night tonight.




Tuesday 23 April 2013

Day 5 post-op & 2nd day at home - Tues 23rd April 2013

We only woke Kate at midnight last night to give her paracetamol and she went straight back to sleep & slept through.  That's the good news. Bad news is that having spent a whole night flat in her cot, she looked pretty puffy when she woke up.


This obviously went down during the day, and by dinner time she looked like this.  I think this is a bit better than yesterday!


We drew a small crowd at school this morning and I explained what had 'happened' to Kate to a few people, and a few more at pick-up.  

She has got her appetite back, picking all day and eating some lunch and a reasonable amount of dinner she also passed stools without screaming.  It seemed we'd been sprung into Summer today, missing Spring, and Nikki asked for the paddling pool after school and I thought this would stop them running about inside or the garden, which is hard to watch when you know she could bang her head or face at any moment.  It was a great idea.

Here's a cheeky pic!


I gave Kate a quick bath/shower to wash her scar, as it has to be washed every 2 days and she's gone to bed as normal.  Nikki is exhausted, I think all the fun and sleepovers are going to take a while to get over what with all the 'learning' she's doing at school too. (She just turned 5 in March)

Monday 22 April 2013

More Videos (Surgery was on Weds, 17th April 2013)



Night time clip - Thurs night

Friday - Temporary Room on Koala Ward


Saturday our room on Peter Pan Ward


First night & day at home - Day 5 post-op

Kate woke at 12.30 crying.  Obviously, she still needs both Ibuprofen and Paracetamol.   She ended up in our bed and at 4am and again at 6am we gave her another dose of ibuprofen. Her crying woke Nikki at this point but I managed to persuade her to go back to her bed for a while.  By about 7am we were all in our bed together.  It was actually lovely.  Nikki & Kate played all morning whilst getting up & dressed.

Nikki gave her a kiss goodbye.  She was quite excited to be going on the walk to school with a friend and both Nikki & Kate enjoyed waving goodbye to each other.


Kate still isn't eating much but is drinking milk and the hospital didn't seem worried about that, as long as she IS drinking and eating something and it's staying down.  She'll get her appetite back soon, I hope.

We played and played and I sorted washing and things when she slept, then my best friend came to visit with her littlest, who is almost 3, and they played really nicely and gently!

We then went to get Nikki from school and go on to her ballet class.   A few mums knew, and some I saw did not know about the op. I didn't have time to go through the whole thing but everyone was surprised how well she looks, considering what she's been through!   I suppose the swelling has gone right down now and her eyes aren't too puffy, just very bruised looking.

My Mum had Kate while I took Nikki into ballet.  She lives almost opposite where Nikki's ballet class is and it meant I didn't have to explain her black-eyes to all those other mums!

They both ate rather a lot of snacks at my Mum's after ballet so I didn't expect Kate to eat much dinner but she started to cry after a few mouthfuls and then got beside herself.  I looked at my notes on what time I'd given her medicine and she wasn't really due anything yet.  I held off for 15 mins and then gave her another dose of Ibuprofen but this didn't work.  She carried on screaming and cyring a lot and I was wishing hubby's train would hurry up.  Then she made her signs of needing to do a poo.   We had been warned that the medication can make them constipated and she tends to be that way anyway.  An hour and 10 mins later, and 2 small hard stools passed, she was still beside herself screaming hard, pushing me away one minute and cuddling me the next.  That was hard work and can't be good for her head to be straining or crying that hard.

She ate a bit more dinner and had her milk before bed once she'd calmed down.  Nikki went out like a light too.  The Teaching Assistant had come out to ask after Kate and to tell me Nikki was VERY tired at school today.  Not a surprise after the last 5 days staying away and having so much fun!

I shall be checking what times Kate is due medicine and setting an alarm tonight so I can give it to her when it's due as she obviously needs it, and I felt guilty this morning that we hadn't done that last night and she'd woken up in pain/discomfort.




Getting home - Day 4 post-op - Sunday 21st April 2013

Day 4 - post-op on Peter Pan Ward


As soon as Daddy arrived we informed the nurse in charge that we were ready to go home as soon as Kate had had some lunch.  She ate a tiny amount.

The nurse removed the cannula from Kate's foot gave us Ibuprofen for her & updated the last dose of that & paracetamol on her paperwork.  She confirmed our next appointment - in 3 months as her stitches are dissolvable - will be sent to us in due course and that was that.  We left.

Going home, Sunday 21st April 2013

The London Marathon was in full swing although Kedede had won the race already. It's quite a big day for GOSH, as there are lots of people running for them, including previously our friend the play specialist who used to work there.  Luckily it didn't hinder our journey home, we saw a couple of runners from our bus to Victoria, and Kate slept for most of the train journey.

After receiving some things back from my Mum & Dad of Nikki's and having a cup of tea with them at home we bathed Kate for the first time & washed her hair and scar.   It's very neat and hardly any hair has been shaved.  It's almost un-noticeable.  What I did notice was a huge ridge in her head where it is.  That turned my stomach.



Kate had noticed that Nikki wasn't home and started saying, "Didi da dool". (Nikki's at school!)  Little did she know it was Sunday & Nikki was coming home soon, after she'd had dinner at my sister's house with her cousins.

When we knew Nikki was coming, we told Kate & got her ready:


Nikki's first words were, "Oh, purple eyes"!

YEY!

They were both ready for bed at a reasonable time and went off to sleep happily.   I got everything ready for school for Nikki.  Hubby and I sat on our sofa together for the first time since last Tuesday.  We watched TV for an hour or so before I went up hoping to catch up with some sleep.


Sunday 21 April 2013

Day 4 post-op morning

I didn't have a good night. Kate woke at 12.30 crying & wouldn't settle. Ibuprofen hadn't been subscribed (because she'd been taken off the system it needed a Dr to do it again) so she ended up in my bed. I woke at 5am & tried to put her back in the cot.  She fussed & we got up at 6.20am.

Her eyes are both half open & some of the swelling has gone down. You can see her checks & dimples now.

I got dressed before 8 as previously the Drs have been round about 8.30 & I didn't want to miss them. They came about 11 & checked redness in her eye I was worried about.  They said they're quite ok with us going home today. But, if we do we are discharged so anything after we can phone up to ask about but have to go to/be referred back via GP, so we need to be sure. I said I'd wait for Daddy to come but pretty sure we'll go home today.

I started ringing my Mum & sister to sort out arrangements as Nikki gas a party to go to today & they've basically sorted that between them and are feeding her a proper dinner before she comes home, and making a dinner for us.

Engineering works & Sunday services are going to hinder our journey home but well get picked up nearer home by my Dad.

Daddy just came back so we'll sort lunch & discharge paperwork next.


Saturday 20 April 2013

End of Day 3 post-op

When I arrived Kate had just gone to sleep after a busy morning playing with Daddy in our new room on Peter Pan Ward and in the playroom.

Drs had come but Daddy didn't really know who they were because he was busy dealing with a poo. Yey - it's her first in 5 days and is another thing NOT stopping us getting home tomorrow.

The bruising has come out under her eyes now too, but the tops have lessened in colour and they're open a lot more.

We didn't get much attention from nurses today. The one who was due to finish after lunch said Kate had accidentally got discharged on the system so had to put her back on again to administer medication etc.

Kate woke unhappy at lunchtime, refused hospital lunch & ended up having tiny bits of bread dipped in jam & honey and later on after some more playing a custard pot. NOT her normal hungry self.

I asked twice about bathing her as we were going to do it yesterday but when the move came about it just didn't happen. At this point I got concerned as to whether the Cranio team still had us on their 'list' and I ended up on the phone to Koala Ward. The senior nurse came to see us with some Cranio discharge info for us and the nurses on this ward. She went off to speak to the nurse on this ward in charge of Kate & came back to say it was the Cranio team Drs who had been this morning (when I wasn't here) & they would be back tomorrow to see her again & possibly talk about discharging us. She also gave them care instructions for Kate, including to give regular ibuprofen & paracetamol. So all is well.

We decided not to bother with bathing as they want to keep the cannula in her foot, just in case. Keeping her amused all day took both of us in turns and sometimes together.

She had a bit of dinner, again nothing like normal. She carried on playing and messing about doing this and that, watched Dr Who because CBeebies had finished (She watches 'Doctorwooo' with Nikki) and a bit of Briton's Got Talent until finishing her milk & being TOLD its bedtime at 8pm!

I've discussed night observations with the night time nurse & hoping to get a reasonable night's sleep. Am off to make dinner in the kitchen & then probably Hirt my head down.





Sleeping Night 2/3 post-op
Day 3 post-op (Saturday)





Day 3 post-op (Saturday)

Day 3 post op : morning

I asked the mums on some cranio groups last night about the swelling & one kind mum posted her post-op photos. Looks like the swelling goes down as quickly as it goes up, so hopefully in a few days she'll look more like Kate again.

I slept right through until 7am at home. I started to think about the practicalities of coming home. I have a Mum on standby to take Nikki to school on Monday morning who would be going past our house anyway. She knew about Kate's op and its silly not to ask for help. I'm dreading all the mums asking about what's happened to her & not sure how happy she'd be to be left outside while I take Nikki in.

Nikki (our 5yr old) had been at my sister's last night with her cousins and was due to come by our house to collect her arm bands on route to the other Grandma's to go swimming. I was now due to be there when they came & my sister thought she'd be happy to see me (in fact she wasn't really bothered!). I obviously wanted to see her but didn't want to upset her by seeing me when I was going away again.

I scooped her up from the car into a cuddle and took her in for a chat & I tried to prise out of her what she's been doing for the last 3 days! I showed her the videos of Kate playing (now on this blog). She'd seen the photos on the Blog with my mum after school yesterday. I'd asked her to show Nikki. She asked for more & so I showed her all the photos I'd taken off my camera on the computer.

She said she wants to see Kate. I explained that her eyes are too sore but we may be able to bring her home & all be home again tomorrow. She said she'd like to have another sleepover at Aunty Nina's if she needs another sleepover. Not a surprise, as she adores her cousins :)

I then spoke to Daddy who said Kate had been up & on her feet in the room last night & he was in the playroom with her when I rang. She'd had some milk but refused breakfast. I'm on the train again going back now.



Videos - Kate getting better Day 1 & 2 post-op


Friday 19 April 2013

End of Post Op Day 2 - Fri 19th April 2013

Daddy arrived before we got moved, temporarily to a private room by the nurses reception desk, still on Koala ward.  I was glad we weren't staying there with all the chatting, congregating of doctors and nurses and phone constantly ringing.

Here, Kate got her first hospital lunch I'd ordered earlier. She took a couple of teaspoons of each thing but had much more fun poking peas into my and Daddy's mouth & laughing.  At this point she had one tiny slit she could see through so had also been watching TV.   The red and swelling was beginning to come up under her eyes too now.  I noticed she was pulling a strange face, stretching her mouth a lot so I mentioned it to the nurse and she got someone from Craniofacial to come and look at this and she doesn't think it's anything to worry about.  Daddy thinks its her straining her face to look out of her eyes anyway.


After this food, she really perked up and chatted, and played with us, the iPad Daddy had brought in and looked at her books.  She then had some milk and I pushed her round in her pushchair to sleep. 



We then got moved to Peter Pan Ward, which is in the older section of building, but we got a private room and a cot for Kate, at my request as she's now getting back to her normal self, I would expect her to climb out of the bed.   She seemed to like it and the new surroundings, especially as by now she could see a little more out of both eyes.  She chatted a lot and even did some moves, standing up in the cot.



As planned, I'm doing a night-shift swap with Daddy.  So, I got Kate's milk while he went to get himself some food and got her into bed and then left for home when he got back.   That was about 8pm and it takes a while to get home so I'm just writing this before going to bed.  Apparently she's already woken and had a Facetime chat with Daddy using his iPhone & iPad - they are in the same room! Such geeks!






Morning, Day 2 post-op

This morning I woke, as always with a start to her cry & jumped up to see. The chair/bed is very low down. Kate was sitting up in the bed & looking so lost, her big head going side to side moaning with her purple eyes obviously shut & her arms out to the side. She'd got the bandages off her head. I immediately picked her up & she koala cuddled me & I sat back down & wept over her for a while. I knew this was coming. The part when you just want your old baby back, the one you recognise & play with & run around and moan about all day for getting into everything.

We'd had a fairly good night. She didn't settle well as I think they are trying to get her off the morphine now but paracetamol wasn't enough so she had morphine in the end.

I suggested we try milk if she woke in the night as she's refused it at bedtime & they don't really want to put her back on the drip. At 2.20am I woke to her cry & she had been 'seen to' without me waking. The nighttime nurse seemed to be trying to do that with all the children, as I heard her dealing with the baby next to us and hushing him as she did her checks. Kate had had a nappy change then & some milk but that had come back up. I held her while they changed her bedding & cleaned up. The nurse gave her some more anti-sickness medicine through the one cannula in her foot that's left.

Today Kate looks like her eyes are shut but I think she can see something as she has said a few things and pointed & said tractor at Bob The Builder on the TV.

She heard me rustle my tissue packet & said biscuit (hers also come in a cellophane packet) so I offered her one but she didn't seem to want it. A while later she asked for her milk & drank it. I got the pushchair & walked the corridor circuit until she went off to sleep & went for a shower & breakfast. Tom is off so we have Helena as our nurse today, though Kate tends to say, "Goodbye Tom", to anyone who deals with her now!

Two doctors who were in on Kate's surgery came this morning, confirmed we can wash her hair & that when we are happy & she can hold down food & see a bit more we can go home. Probably Sunday.

Kate had a tiny bit of porridge & mid morning asked for the grapes I was eating & we 'watched' CBeebies again for a bit. The nurse did her ops in the high chair.

I thought if shes going to be awake a bit more, so less under blankets, and now she doesn't have cannulas everywhere I ought to clothe her. The first suitable thing I pulled out is a cotton dress that can be pulled up to be put it on. Now she looks like a little girl :)

I checked on her medicines with the nurse as she seemed to be fussing but she isn't due any more paracetamol until lunchtime so I pushed her in her pram to sleep.

We are being moved wards as they've an emergency gone into surgery & we don't need high dependency care any more. So I have packed up our things & warned Daddy as he's only just left home.

Thursday 18 April 2013

Post op day 1 continued

Daddy arrived about 11.30am and I handed Kate over to him. I'd been holding her in the chair & the nurses had changed her bed sheets.

Then once all the lines were gone we put her into her pushchair & walked her round the ward. She said,"Bye bye people", and waved as we left our bay. This felt very strange when you know she can't see!!

When we started on our lunch I offered her a small amount of milk again & much to our delight she took & drank all of it. She then nibbled a biscuit & really perked up. She could see us with one eye through tiny slit. We chatted with her & even got her laughing. This lasted about 20 mins and then she went back to sleep still in her pushchair.

This sleep delayed them removing her drain, but meant she got morphine before that, and she had some more milk too.

I also went out for a quick walk & bought something to have for dinner.

The nurse, Tom, removed all the bandages from her head to change them. Amazingly, we couldn't really see her scar through her mangled, squished & sweaty hair. The nurse said that surgeons are very good hairdressers! I am now hoping her shaved bit & scar are going to look quite minimal having seen what we did.

Removing the drain is uncomfortable so I didn't stay for it but heard her screaming from quite a way down the corridor from the treatment room. It was done quickly and still in her pushchair, a first for Tom. She had a bit of biscuit back in our bay & went back to sleep.

The nurses say she's doing really well & looks good but what you can't see is that her head has swelled to the size of a 3 year old's & obviously her eyes look dreadfully sore, so to us she looks awful. Peaceful though & they say that they know she's not in pain, I assume from doing this procedure on older kids who can tell them.

Here she is in her new bandages:

Day 1 post-op

I basically decided I was up at 7am when we gave Kate more morphine, as some lights came back on. Kate had been much the same overnight, crying when she woke/ran out of medication and when the nurse came to do checks, which is quite often.

This morning I saw a slit of her right (to us on her left) eye and think she saw the man opposite & tried to say something. She also tried to say something during the night. That was lovely. To hear her make a sound other than moaning or crying.

Professor Hayward also came again, just now with a troop of other people I chose to ignore as I'm still in my Pjs. He said we just have to deal with this for a few days and she'll be fine.

He was happy medically but warned again the swelling will get worse still.

Kate lost some wires she no longer needs overnight & he said they can take her drain out today. The one from her head taking excess blood away as its not draining much, which is good. Also possibly the cannula in her hand, though it's


the one in he'd foot she's been trying to get off.

We've just had a little chat through her slurred eye again, she looked at me, nurse Tom and tried to say Tom and leg :) Kate is just learning to talk at the moment, so this is great to hear, and again in preference to the hoarse crying sounds we've mostly heard since surgery, it's a joy :)

It's funny to see she still has the pen on her hand from when we were playing in the waiting room yesterday morning.

Wednesday 17 April 2013

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.








Tuesday 16 April 2013

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.




Monday 15 April 2013

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.



Tuesday 9 April 2013

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!











Monday 8 April 2013

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!