Laura's home!!

Laura got home on Monday afternoon. She's alot better now. She's starting to weight bear through her legs and is sitting much better. She is being weaned off Epilim and its making a difference.

Laura's in Temple Street.

Laura has a really bad dose of a viral/chest infection. She was admitted into Temple Street Childrens Hospital on Wednesday. She's on oxygen and will be there til after the weekend. Even though she was spiking temperatures, she still has had no seizures (Thank God). All her bloods and urine samples are coming back fine. She is on an intravenous antibiotic also. She is improving a little day by day.

Upsy Daisy!!!

We dressed Laura up for Hallowe'en as Upsy Daisy from "In the Night Garden" because God love all she ever used to was fall over. She used to be so floppy it was all we seemed to say to her. But that was prior to surgery. Here she is sat beside her big sister Emma and little brother Aaron. Laura can now sit up by herself for quite some time. She is only 8 weeks over the operation tomorrow. She is a changed child. At the moment we are having some feeding issues but it seems to be down to teething as when we do get something into her she isn't spitting it out! She is alot more alert, alot more nosy!! Laura's getting a giddy little girl, so here's to the new Laura xxx

Laura's babbling!!!!!

Yesterday Laura started saying na na na na, then ma ma ma ma. This morning Emma shouted, "Mammy, Mammy she's saying da da da da!! Was thrilled, I swear I woke Brian up at 7.30 this morning to let him hear her, he only got in from work at 02.30am. He was chuffed to bits. Emma is listening to every sound Laura is making. We are starting speech therapy on Monday week so am making a list of Laura's new sounds. We had physio last week and her therapist couldn't get over the difference in Laura's trunk control in just the few weeks. She will be 6 weeks over the operation next Thursday, am shocked at just how much the seizure's were holding her back.

Laura's 2!!

This is picture of Laura on her 2nd birthday. Since she got home last Friday, she has had a vomiting bug for a couple of days. God love her she has been real cranky all week. Soooo not like her, well not the old Laura anyway. But since the operation she is eating stuff she would never in a million years have eaten. She is even drinking from a beaker, which was unheard of before surgery.

She went back to pre school on Thursday and is going to a joint physio & occupational therapy session on Monday. Easy time is over, time to get to work!! She is sitting up alot straighter since the surgery. She still can't sit on her own but hopefully now with alot of physio we'll see some difference.

Laura's home!!

They let Laura home today!! At this moment she is fast asleep in her own bed. I really don't think I could stand another day in a hospital. So all is well with her at present. Will keep you posted. Its her birthday on Tuesday, thank God she's home.

Laura got transferred

Laura got transferred to Temple Street last night. She is doing really well. However her big sister Emma has chicken pox!! She is in isolation at the moment as she was in contact with Emma. There's a question now over whether the water blisters that Laura was breaking out in prior to surgery was nothing to do with tegretol at all. We are waiting on results of a blood test. She is now finished on Tegretol as of today and she'll be weaned off Epilum now. She is charted to be discharged on Friday, all going well. Can't wait to get her home.

No beds........

Temple Street Childrens Hospital cannot accommodate Laura at the moment (Thank God!!) They are full. She will remain in Beaumont for the moment. They brought Laura down to theatre this morning to put her under a general anaestethic to put a central line in as her veins are worn out. She is still on the intra-venous antibiotic. They will test her again over the weekend to see how her infection is doing.

The Hemispherectomy Foundation

Today Laura received a parcel all the way from Texas. Cris & Kristi Hall from America have set up The Hemispherectomy Foundation. It is a Foundation in the US to help familes of children (or adults) that have needed to have half their brain removed. They very very kindly sent Laura some gifts of a toy, teddy & beautiful crochet blanket. I swear, the nurses were mesmirised!!!
I had been telling them all about the other children I had been reading up on and then comes this box of pressies for Laura. It was brill. I keep referring back to all the other children we have gotten inspiration from that have had hemispherectomy's. Everybody here thinks its great that we have received messages from America nevermind the thought of sending some beautiful gifts. My Dad is amazed!! We would like to thank you from the bottom of our hearts for thinking of our little girl many many miles away from you. It was soooo touching it made us cry xxx

Laura's getting transferred to Temple Street

The update with Laura is that one of the tests showed an infection in her secretions from her chest. She's still spiking temperatures randomly. They are starting her on a third antibiotic. But the problem is that they can't get anymore access from the veins in her hands or feet so she has to go to theatre to get a general anaestethic to get a central line put in, as the antibiotics are intra-venous. She still has some runny nappies which isn't helping her bum at all. She is screaming every time she wee's.

So the long and the short of it is that from a neurosurgical point of view Mr O'Brien is very happy with her so he is essentially finished with her. The reason they are trasnferring her to Temple Street Childrens Hospital is there are more paediatricians available & its where her neurologist is based so we can get her weaning of her anti-convulsants sorted too.

Laura's war wound

Over the last couple of days Laura's haemoglobin dropped, so she needed another blood transfusion. Her temperature is still fluctuating like crazy. She is being given loads of paracetamol. She's having lots of blood tests to check if she has an infection anywhere. So far they have all come back negative.

God love her she has an unmerciful sore bum!! The paediatrician thinks the food they were giving her through her feeding tube might be upsetting her tummy and so has given her an awful dose of diariah (spelling to be querried again!!). They have changed it tonight so we'll see how it affects her overnight. She took a good bit of oral feeding today but she refuses her bottle so far.

She was off oxygen most of the day. She's really only being kept there because of her chest. Its improving every day. But we're used to Laura having a bad chest and at this stage we just want her home. Mr O'Brien will review her again on Friday.

Daddy so proud!!

Hi all its Laura's Daddy just to let you know I am so proud of my little girl! I left her this evening and the difference in her form since yesterday is unreal. Laura was drowsy, chesty and not in the humour of much but today I got a hug, smile, head pulled off me and a very giddy girl. It was brillant to see the change!! Laura has been through so much in her life so far and has come along way but to come through brain surgery like she has is absolutely fantastic. I cant thank the staff,doctors and especially Mr O'Brien enough for the care and the new life she will have. I as a Liverpool supporter thought I'd seen a miracle in Istanbul but Laura you have out done that girl! "You will never walk alone". I am so proud of you laura and will always be there for you. Keep up the good work!!

She's getting back to her old self!

Laura's blood count was dropping so they decided to give her a blood transfusion. The microbiologists found a bug in her system so started her on an antibiotic. Both of those were started last night and today she is in bloody great form. She's kicking, pulling hair, throwing things on the floor and trying to take the nurses pen while she's writing up her obs!! Mr O'Brien wanted a review of her meds, so at the moment she is being weaned off Tegretol. I cannot explain how much of a difference there is in her since yesterday. She even took some porridge orally today. Fingers crossed we can get her back to oral feeding over the weekend. I did notice a slight tremor in her left hand and foot but when I put my hand on it it stops. The paediatrician will keep an eye on it. Apparently is nothing to worry about. So keep your fingers crossed she keeps improving as we miss her at home. Emma keeps telling me she has a wish and when I ask her what it is she says her wish is for Laura to hurry up and get better so Mr O'Brien will let her home!!

Laura's laughing!!!

When i went up to Laura this evening she started laughing and was smiling. I wasn't sure when I'd get to see her smile again but there is was ear to ear tonight. Mr O'Brien was on to neuorologist in Temple St, they are starting to wean her off Tegretol, starting from tonight. They hope to get her off the n.g tube over the next day or so, so she can get established on oral feeding and also take some of her drips out. I REALLY hope they do because then I can get to hold her. Its been a very long week not being able to hug her after all she's been through. Oh by the way the time the posts state underneath is not our time. Its 23.15 now so we'll see what time it says I did this at. Carol Ann, even I'm not mad enough to post at 4 o clock in the morning!!!

Laura's out of ICU

Laura is out of intensive care. She was transferred down to high dependancy yesterday afternoon. She is still on oxygen, although it is reduced. She has some secretions stuck in her chest but they are giving her chest physio to help her shift that. They are stopping her on the oral dose of zovirax for the infection in her hand as its giving her diarriah. They will keep applying the cream.
Because of surgery the times of her anti convulsants are all over the place. So she's not as alert as they would like. They are trying to bring them back to only morning and evening. They are giving her Calpol & Nurofen because her temperature is up and down a bit, so all in all she's fairly pumped with medicine. The swelling on her face has gone down but the side of her head is still quite swollen. I think she is doing well considering she is only 6 days post operative.

10 rounds with Mike Tyson!!

Laura's temperature is still fluctuating up and down. Mr O'Brien was around this morning. He is happy for her to remain in intensive care as they are not pushed for beds at the moment. She will be getting a chest x ray today just to be on the safe side. Nurse said her secretations aren't as bad today and neither is her cough. We can't get in to see her just yet as they are busy so will give an update after i see her.

The best news EVER..........

We met Mr O'Brien today. He studied Laura's CT Scan film, he exact words were "It's fantastic!!" I couldn't believe it. I know the doctor last night said it was satisfactory but nobody's word is as good as Mr O'Brien's. He also said, and this is the best bit.................. she has been cured from epilepsy!!!!! All Laura's activity was coming from the left hemisphere and thats what he took out. According to the CT film there is nothing there that should cause her to have any further seizure activity.

Her left eye is totally shut today as swelling is really kicking in now, other eye is opening more and she is following us when we move. They are hoping to move her out of intensive care tomorrow and down to high dependancy. Although nurse did say that her secretions are starting to get a bit thick which is a sign that she might be brewing a chest infection. Chest infections are nothing new to Laura. But we'll wait for the nurses report tomorrow morning.

CT Scan results are in

How much better does Laura look????? The doctor that was on last night had a look at her CT film who said her scan is satisfactory!! THANK GOD. There is a sample of her nappy gone to the lab for examining as its quite runny. Yesterday her white blood count jumped way up, which sometimes is a sign of infection but nurse said all is good with her so far. Am heading up there now so if any news I will update. Thanks for all your lovely messages of support.

2 days later

Today is Saturday, its two days since Laura had her hemispherectomy. Her breathing is much much better and so didn't need to go back on the ventilator. Mr O'Brien was around and he sent her for a routine CT scan. up until i left at 8pm there was no results.

She had her eyes open a bit today but doesn't seem to be focusing on much yet. For anybody who knows Laura personally, they'll know her party piece is pulling your hair. Well today I turned to look out her window and she reached out and yanked my bloody hair!!! Welcome back Laura!!! We are seeing a little bit of improvement every day so we look forward to what'll see tomorrow.

24hours post operative

Well the doctors took Laura off the ventilator this morning. She had some problems breathing on her own at first but improved over the day. They have her on 100% oxygen. She had a slight temperature but apparently thats quite normal after surgery.

My Mam & Dad went to see her for the first time since Wednedsay. Oh what a shock they got when they saw her. But Mam helped the nurse change Laura's dressing and so saw the scar, apparently its very neat (big but neat!). Laura also opened her eyes for about ten minutes too which was great to hear. Her hand has cleared up alot thank god.

So all in all she's improving, tomorrow is another day...............

Post Operative.............

Mr O'Brien is extremely happy with how Laura's surgery went. She was still in theatre til about 6 o clock this evening. She was then transferred to intensive care. We only got to see her for about 15 mins. She looks pale as she lost alot of blood in surgery but is having a transfusion. She is only slightly puffy but has tubes everywhere and is hooked up to loads of monitors. Nurse said she may look worse tomorrow so to prepare ourselves just in case.

Mr O'Brien is keeping her sedated until tomorrow to give her a rest. Her scar looks bigger than I thought and half her head is totallly shaved, she looks like a punk! I am amazed at my little girl, I am sooooo proud of her. Please keep her in your prayers as she has a very tough few days ahead of her.

She made it.......

Laura's surgeon, Mr O'Brien just rang down to say surgery went well and she is stable. He is just finishing her up and then she will be transferred to Intensive Care. It'll be another hour or two before we get to see her. I can't wait. Will keep you posted.

D Day

Well today is the day. We went to the hospital early this morning. Mr O'Brien came to see her at 07.20. We brought her down to theatre and I was allowed stay with her until she was anaesitised (probably spelt completly wrong!!) Its 10.15 now so procedure is under way. Not sure what to do in the mean time. We've to be back there for 13.00 so when I get a chance later I will give an update.

What a day!!!

What a day. The samples that were taken from Laura's hand yesterday, one of them was lost in transit. Another had to be taken today. Dermatologist thought it was a virus caught from being in contact with someone with a cold sore.

We waited patiently all day for Mr O'Brien to come around. He called in to see us at 18.20. He gave her the go ahead for surgery. The infection on her hand is contained and hasn't spread. Not only are they keeping her hand smothered in cream and bandaged up, they are giving her an oral dose too.

So its all systems go for in the morning. Will keep you all upated and thank you all for messges.

Laura goes to Beaumont

Laura has been breaking out in water blisters (which I think is a side effect from her medication Tegretol) but over the weekend blisters on her hand became infected. I had her at the GP yesterday who gave me cream. I had been panicking all over the weekend about her being chesty. Never in my wildest dreams did I think that this is what might put her surgery in doubt.

Mr O'Brien (neurosurgeon) came around in the afternoon and when he seen her hand i swear to God he was going mad. I was picking my stomach up off the floor for fear he was going to say no to surgery. He requested a paediatrician to assess her to make sure infection was no where else. It isn't. Two samples were taken and will be brought to the Virus Lab in UCD by taxi in the morning for urgent analisys. Results should be back by lunch. She is now in isolation and only me, Brian and my Mam and Dad are allowed in. They have her hand smothered in a new topical cream which will be re-applied every 5 hours or so and bandaged up. As long as its covered up and doesn't spread she should be ok for theatre.

He gave us the go ahead pending results of the sample. He needed her hand to put IV lines in. She'll have them coming out of her neck and now her groin because he won't be able to use her hand. He has ordered 4 units of her blood type which will be delivered tomorrow night, ready for Thursday morning.

The night before admission

Its the night before Laura's hospital admission. The last night she'll sleep in her own bed for a couple of weeks. Please God all will go well as she has had a temperature over the weekend due to teething and has been a bit chesty too. She took a few seizure's on Friday so i know in my heart of hearts this is the best decision for Laura. So will keep this blog updated with her progress. I am so hoping that her surgery won't be deferred.