I'll take a copy of this to our next eye appointment at Sutton Eye Hospital to make sure so we get the squint issue properly checked/confirmed.
Saturday 10 August 2013
Letter from GOSH
Thursday 8 August 2013
Post-Op Appointment on 1 August
Last week, Thurs 1st August, was our first and only post-op appointment at Great Ormond Street Hospital (GOSH), London since Kate's frontal orbital remodelling surgery for left-sided uni coronal craniosynostosis (cranio surgery) on 17th April 2013.
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
The latest is one of my latest favourite pics of Kate, happy as ever, with her two big dimples, gappy teeth and one curl on top of her head. She is so cute & funny, she makes us unbelieveably happy.
Wendy Ager
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
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| Kate, April 2013 |
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| Day 2 (I think) post surgery - 19 April 2013 |
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| Kate, July 2013 |
Wendy Ager
Friday 28 June 2013
Letter from eye hospital
"Dear Dr
It was very nice to see Kate today. She has had cranial advancement from which she has recovered extremely well.
From the eye point of view, we have no concerns today and all looks healthy. We will be reassessing her again in the Eye Clinic in 6 months.
Kind regards,
XXX
Consultant Ophthalmic Surgeon"
Saturday 15 June 2013
Post surgery Eye Appointment
We saw the ophthalmologists and consultant this Thurs, 13th June 2013, at our local eye hospital.
I mentioned the squint and first the lady who did all the basic tests said she sees no squint. This was extremely good to hear. Kate being able to talk a lot more now was able to be tested better than before as she could name all the things they were holding up for her to see this time. She's now 20 mths old.
By the time we saw the consultant Kate had had enough of waiting. Me too! It was difficult for them to examine the back of here eyes etc as she didn't like them (one man & lady) at all. Crying isnt a good 'mode' to be in for an eye examination! I had been prepared as we've waited a long time there before, but she was hungry and she didn't like their lights or headgear!!
A chocolate roll helped & the consultant got to see what she wanted in the end and said there's no sign of any problems, pressure or anything. She seemed happy with everything.
She thought Kate looked remarkably good after her surgery and said that the darkness under her eyes will continue to fade, it's just a very sensitive and translucent bit of skin.
We will have a follow-up appointment with them in 6 months.
Wednesday 5 June 2013
5th June, 7 weeks post-op
Just a quick post to say Kate still has very slight dark marks under her eyes still but they are fading.
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
I'll post again when we've had our appointment next week at the eye hospital.
Friday 17 May 2013
One calendar month Post-Op!
It's a month ago, today, since Kate had her surgery. Here are some pics to compare and my current thoughts.
My thoughts and observations:
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| 15/05/2013 |
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| Before pic from March 2013 |
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| Recent Pic, May 2013 |
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| Before pic showing dip in forehead |
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| 17 May 2013 |
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| 17 May 2013 |
I still think her right eye 'looks' bigger than her left, which was the original thing that I flagged up when she was a tiny baby. The surgery was frontal orbital remodelling, so we thought it was supposed to correct this, as well as her head-shape and the premature fusion of the coronal suture. She still has a little darkness to the skin under her eyes.
Her forehead is definitely more even and rounded, without a flat/dipped bit above HER left eye (looking her and the pics - on the right). I still think her forehead is a bit swollen. I think her facial symmetry is better and this is all good :)
I hadn't noticed her eye being turned in (called a squint) before the op but now I look I can see it was a bit pre-op, but it looks more pronounced now, post-op. We were hoping surgery would avoid her getting a squint.
Now that the stitches are loosening and when the wind blows, you can easily see her scar and stitches , but when her hair grows some more this will be hidden I'm sure.
We've got completely back to normal, going to classes, toddler group and I'm even taking her to a fun place we love with a bouncy castle today. She had a bad knock to the head the other day but she's fine, and we've stopped giving her any medicine at all now as she seems fine & isn't obviously swelling up any more.
Thursday 9 May 2013
Another week went by!
Kate still has just slight dark marks under her eyes that make her look like she's had a bad night's sleep! She's mostly sleeping through though and her eyes are not obviously swollen in the mornings any more. Her forehead and head still look swollen to me. She has had a couple of mornings when her waking screeching is suggestive of pain, so I've given her ibuprofen then and I'm continuing to make her daytime nap in the pushchair, only slightly tilted so she's not flat.
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| Mon 6th May |
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| Tues 7th May |
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| Weds 8th May |
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| Thurs 8th May |
I've almost fully recovered from the horrible flu-like illness of last week, and people have stopped stopping us to ask what has happened to her, though in returning to our classes & playgroups (just the ones without slides and bouncy castles so far!) it's still a major topic of discussion as our absence has been noticed!
Wednesday 1 May 2013
Is it Weds?! YES! then it's 2 weeks since her operation date!
Daddy was home very late last night. Dinner, bathing & bedtime almost broke me yesterday. I got so hot & sweaty (I have full on flu) I had to have a shower after & a lie on the bed to recover. The house was a bit of a mess!
Kate just still has slight darkness under her eyes. She has been brilliant today, considering neither of us got dressed and apart from essentials like food, drink & nappy changing I've been on the sofa all day nursing my flu. Another Mum took Nikki to & collected her from school for me.
I had a sleep when Kate slept for an hour at lunchtime after she unexpectedly fell asleep in her strawberries!
I provided an easy dinner & resumed my sofa position & Daddy's home in time to do bedtime. Thank goodness.
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| Weds, 1st May 2 weeks after her op! |
I had a sleep when Kate slept for an hour at lunchtime after she unexpectedly fell asleep in her strawberries!
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.
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| Day 11 Post-Op - Mon 29th April 2013 |
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.
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| 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.
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| Morning - Sun 28th |
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| 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.
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| Saturday Morning |
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| Saturday evening |
Day 8 Post-op (Fri 26th April)
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| School run - morning |
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| Dinner time |
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.
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.
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.
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.
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.
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| 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.
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| Dinner time - Day 6 post-op |
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!
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.
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
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| 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.
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| 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:
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| Nikki's first words were, "Oh, purple eyes"! |
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| 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.
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.
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.
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.
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| Sleeping Night 2/3 post-op |
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| Day 3 post-op (Saturday) |
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| Day 3 post-op (Saturday) |
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