29th November 2012

There's no real amazing updates at the moment. Each day he is showing signs of tiny amounts of improvement, and its going to take a very long time, but I have faith that we will get there! Aydan's doing it all on his terms, and he'll let us know when he's ready :0)

I thought I would update his blog with some useless facts instead...

So I've just been sat with Aydan's notes, and its taken me an hour, but I've worked out how much blood and blood products he's received so far since being here....
Blood = 3,311mls or 5.81pints
Plasma = 155mls or 0.27 pints
Platelets = 753mls or 1.31 pints
Cryo = 72mls or 0.13 pints
Wow!!! That's a lot!!!

I will be starting to donate blood just as soon as I get chance to, as its not until something like this happens that you realise how much blood donations mean to families!

Aydan's just giving page is doing amazingly well, and I can't get over people generosity! Even from people we don't know! Really restores my faith in humanity :0)

Last count showed £569.62 in donations, including the gift aids!

You can make a donation via my page: http://www.justgiving.com/AydanBranOakes. It's easy, fast and totally secure.

Aydan's Facebook page now has 476 members too! That's a lot of love in the world wishing my little man better! :0)

27th November 2012

Today I got a bit of a shock when I went to see Aydan! He had one eye open and I could see teeth!!! Apparently it's because they have been working on dehydrating him. They said that when you are on the ECMO machine it leaves your body quite 'wet' on the inside, and also they are hoping that it will help the pools of internal bleeding he's been having!

Talking of the internal bleeding, they have done another ultrasound and have said that the pools inside his body don't seem to be getting any bigger, so I am going to take that as a very good sign!

An X-ray of his chest revealed that he has been getting more air back in the cavities in his chest. They haven't really specified what that means, but I can only imagine that its because either his lungs still have holes in them, or the chest drains aren't working very well!

The X-ray also showed that parts of his lungs were starting to go back grey again, which is a very good sign, it means that air is starting to get back in to them again!

Physio were also very impressed with his lungs, they say that every time they go to do physio that his lungs are moving more and more and they are getting more rubbish off! :0)

We have been told today that we are on high alert for chicken pox! I really hope that he doesn't get that! He's not strong enough to get that too! :0(

I have been given the task of massaging Aydans hands and feet from now on! That makes me feel special because I feel like I'm actually doing something! Apparently that'll help with the water retention he has in them!

The snowflakes in Aydan's tubes have now been renamed to 'the crystal garden' and have had staff coming and having a good old nosey! They are not sure it's a virus by-product after all! I always thought my little man would be very good at science! Tee hee!

I leave you all with the freaky picture of one eye open....

26th November 2012

Aydan is looking much better tonight, he's looking like he's sleeping again :0)

They have said that he will hopefully remain stable on this machine now for the next couple of weeks, and I'm keeping everything crossed that we have no more issues!!!! It's bad enough seeing him on this machine, let alone him having problems on it too!

He's started back on the proper chest physio today too, not quite so brutal, but its a medium hard shall we say!! They have managed to get lots of gunk off his chest, and have said that it looks as though it is starting to break down nicely.

Chest X-ray is still showing that his lungs are still very white though, but hopefully we will see some improvement with that in the next few days.

Fingers crossed that it also looks like they have managed to stop one of his chest drains from bleeding so much! This morning when I was with him, they lifted him up to take an X-ray of his chest, and one of those incontinence sheets was really saturated in blood! It really made me feel sick! So he has had more blood today.

They are going to be sending off samples of the weird snowflakes that he has been growing in his ECMO machine tubes, but they have to wait until the change the machine! That will be really interesting to see what they say anyway. So long as its not affecting little man in anyway.

25th November 2012

Today Aydan's BP has been behaving slightly better and not as low as it had been yesterday.

They have put him back on a ventilator on a really low level (around 6-10 gentle puffs a minute) The idea is that they are starting to help his lungs out a bit as they are very stiff from not being used for the past few days. They will gradually increase this over the next few weeks so that his lungs will hopefully be ready and working again in a few weeks when he's ready to come off.

This morning they did an ultrasound on his belly and chest to see where this internal bleeding was. It seems that he is bleeding slightly into his belly, but at the time it was only small pools, so it shouldn't be a problem, but they are going to monitor it to see if they get any bigger.

He is still having a lot of blood bags and platelets put into his body, and his chest drains and one of his cannula sites has started to bleed again. But after the scare of the internal bleeding (which is still ongoing) I'd rather him bleed outside his body so we can see it!

24th November 2012

This morning was a lovely surprise going in to see Aydan. He has been weeing loads in the night and has lost loads of water retention, and his face looks loads better! He almost looks like a sleeping Aydan today :0)

Around 4pm his blood pressure suddenly dropped really low, and his HB levels were dropping too, but they didn't know why. All signs were pointing to internal bleeding, but I felt like some of the doctors were standing around twiddling their thumbs over what to do.

It must be really difficult for them as any type of cuts or new drains could cause him to bleed even more, or trying to move him for a scan could mean a whole new world of problems.

To add on top of this they have been feeding him through his IV drips, one of the bags is lipids, which is a special kind of fat that his body needs, but these fats have not been absorbing properly into his body, and as a result the ECMO machine and the chest drains have been showing signs of the fat and blood separating, so they have stopped that for now.

The ECMO machine has also been struggling, the tubes in his neck have also been jumping, or 'chattering' as its called. They eventually managed to get them to stop by pulling the tubes out his neck slightly.

After many hours of wondering what was happening to him, and being scared that maybe this was the end. He finally started to stabilise. :0)

His HB levels are still dropping though, and he's still on lots of bags of blood and platelets to help keep him alive.

23rd November 2012

Today wasn't such a good day either for Aydan, particularly after the good news we had last night over his lungs.

Today's problem seemed to be that his 3 chest drains are now bleeding. Sadly bleeding is a problem with the ECMO machines because of the medicine he needs to help thin his blood.

Aydan has had to have several bags of blood and bags of platelets given to him today, so I have been urging friends and family to go an donate blood as a way to repay all the people who have donated to help save Aydan's life.

*insert 2 pictures here*

22nd November 2012

Aydan's operation was a 'success'

Well, as much as it possibly can be for now, there are many problems associated with this machine, but as its probably the last resort of keeping him alive....

Aydan is now expected to be on this machine for the next 2-4 weeks.

They have turned off his ventilation altogether for now, and intend to give his lungs complete rest for the few days.

It is really difficult having to look at your child when they are not breathing. It makes them look unnatural like a doll. It's also bad enough having to look at the great big things sticking out the side of his neck!!!

*insert picture of Aydan on ECMO here*

Today they have been having problems with his sedation, they have tried to change it to another one, but it means that he is fighting it, because it obviously isn't working as well for him as the last lot!

I imagine it to feel a lot like sleep paralysis, that horrible feeling you get when you don't quite wake up...

I saw a doctor who came to see him later on in the night. He said that the air/fluid gaps have pretty much gone in his chest now, and they imagine that his lungs have returned back to the proper place.

21st November 2012

Today Aydan was appearing to be doing really well, his sedation levels were still quite low, and they had started to lower his I.V. Medicines and replace them with oral medicines.

At one point daddy came running over to me in excitement because Aydan was really trying to open his eyes. So I went to look at him and you could really see that he was trying, his little eyebrows wiggled up, and I caught him looking at me twice! I squealed in delight!!

Unfortunately he had become a little too active, so they had to increase his sedation levels again! Boo!!! But it was lovely to see an insight into him again for a little while anyway!

Aydan hasn't been improving as much as he should have done, so we were told that we would have to go for an emergency CT scan of his chest and his head. This brought the news that Aydan would have to be taken off his oscillator and he might not survive the journey to and from the CT scanner.

This was an intense couple of hours, but he managed to make it there and back in one piece.

Next came an unexpected bit of news, it turns out that Aydan's lungs are still collapsed, and he still has a lot of air/fluid around them.

It was suggested that they were going to put another chest drain in, but they were not expecting it to work.

A consultant took us into his office and he showed us all the X-rays, he explained that the ventilator he is on is actually damaging his lungs and if he carries on it, his lungs won't repair themselves.

I was expecting him to say that Aydan would need a lung transplant, or worse, but they have said that they are going to put him on a special machine called ECMO (will find a link when we get home)

This machine basically has 2 large cannulas and tubes going into the side of his neck. This then takes his blood which will then act as his lungs by removing the carbon dioxide and replacing it with oxygen.

Aydan is in such a poorly state that we sat by the phone in the bedroom for nearly 4 hours waiting to hear any news.

20th November 2012

Today I have been to Sainsbury's to buy Aydan some gloves and slipper socks because the cooling mattress/blanket is cooling his core body temperature down, but is making his little hands and feet sooo cold :0( Hopefully they'll be nice and toasty warm now!

He wasn't too bad in the night, but his Sp02 levels kept dropping, so he has had his oxygen levels increased from 60% to 95%.

I got to wipe his eyes and mouth today to help keep his lips soft and his eyes less gunky, he didn't like that too much because he's not liking being touched very much at the moment, but mummy loved it because I felt like I was doing something helpful :0)

They have lowered his sedation slightly, which meant that my little man has been fighting to show us he is still there!!!

I swear at one point, when I opened an eyelid to peek at him that he tried to giggle, because his chest and lips started to quiver!

I have managed to capture a video of him reacting to me and I will try to put it on when I can! Internet signal isn't very good here!

19th November 2012

It's that moment when you wake up at 9am and you think 'oh plop'...

I only went for a lie down for a couple of hours to catch up a bit! I fully intended to be at Aydan's side most of the night! But alas, 2 days of no sleep, no kids around to wake me...

I rushed off to see Aydan!

He looks so much better today, he's still hooked up to a million and one different things, but his colour looks better!!

Aydan has started to have lung/chest physio to help clear some of the rubbish out if his lungs, and although it looks painful, the amount of stuff they can suck off is great!

They are really pleased with how well he is coping to it too, In fact, they are really pleased with how well he is doing in general and were not expecting him to recover as quickly as he is doing!

Over the course of the day they have been dropping the amounts of different types of medicines/gases to see which is the littlest amount he can cope on, and he's been doing really well with that too.

This afternoon they have started to give him milk through his nose because he has been doing so well :0) one of the nurses tried to suck up a little bit of milk after, and was giggling when she couldn't get any back out! She obviously doesn't know how much my little man likes to eat and drink! Hehe!

When I came to sit with him after my tea, the nurse told me that they have dropped his sedation a little bit, which means that he can now move his tongue ever so slightly!!!

Every time I spoke out popped this little tongue, only moved it by a multimeter, but I knew he was listening and excited that his mummy was there! Probably trying to blow me a raspberry knowing him!!

I've decided that tomorrow I will bring him his Peppa pig DVD so he can listen to it even if he can't see it! He probably can't even hear it, but I'm not giving up on the hopes that he can't! If I was lying in bed like that, I'd like to think that someone was trying with me too!

Ooh I forgot to mention that he came back as being RSV positive, with bronchiolitis too, so that is why little man is so poorly and has ended up this way! Nasty bugs :0( stay away from my baby!!!

Here is a picture of little man surrounded by his many machines that are keeping him alive.

18th November 2012

Aydan is currently full of cold, you know the drill, snotty nose, coughing etc.

So it's about 1.45am and he's been coughing constantly for the past couple of hours. I've brought him in to bed so I can keep an eye on him, but his breathing is around 50 breaths a minute and he's starting to sound wheezy :0( I decide to ring the paediatric ward, because although he only has open access for his seizures, I remember that last time he was wheezy he had one of the nasty seizures.

The nurse on the end of the phone was lovely and agreed that I should bring him in for a once over, even if for just to help ease my mind.

We finally make it to the ward after having to go through the miles of mazes that seem to be up at Leighton at the moment, and we start getting the millions of questions that make you have the involuntary eye rolls... And of course Aydan is being his usual monkey self and giggling his head off, clapping his hands, and jumping up and down in the metal cages like he's trying to win the world record for most jumps performed in a minute on the trampoline...

The doctors after seeing him and listening to his chest etc. decide that he's got a cold, but because of his history they decide to keep him in over night and to assess him again in the morning. It's now quarter to 5 so there's not much left of the night anyway!!!

I finally get him to stop bouncing in his cot and get him to drink some of his milk, then when he's finished I lie on one of those horrid brick feeling pull out beds and get comfy, and talk to my friend on Facebook for a bit who is also still awake!

That's when I notice it, his breathing has gone into super drive, so I creep slowly over with the ever hope that he's just having a rather pleasant dream, but no, eyes are staring into space and that's when the whole body twitching starts and the awful breathing! (For anyone who has heard a tonic clonic/grand mal, this is a very familiar breathing pattern!) after yanking the emergency button it's like hitting a confused and slow mo button, because everything then suddenly becomes slow, but at the same time everything becomes all muddled and confusing!

So I got the gist that the seizure started at approximately 5.05, I don't actually know when it stopped because things all started happening after one another and it became like a domino effect! I also couldn't be in the same room with him all the time because watching your child being jabbed with pointy things like a porcupine caught in a hurricane, isn't the most pleasant thing to watch!!!

I DO KNOW that the seizure went on for over an hour because I had someone come to tell me that because the seizure had gone on for so long, and because his blood gases had been at a dangerous level for so long, they were going to ventilate him, to help speed his recovery, and transfer him to an ICU somewhere.

At some point Aydan, who although had finished his seizure, still hadn't fully come around, was sick (aspirated) and it ended up going into his lungs. This in turn caused him to have a cardiac arrest. They decided to call me in at this point and I got to witness the pleasure of him having his heart massaged, which to me looked more like they'd got some bread and was kneading it! This is something which you don't want to have to see being done to your child either! You know he's got no heart beat, you know that they are helping, but my, I think my own heart stopped as I stood there in complete fear, watching and waiting.

They got it working again though, the kneading and the shot of adrenaline helped of course!

The ambulance arrived at some point after to take him to a children's hospital with an ICU, but Aydan was still unstable to travel.

These nurses and doctors, I have an AWFUL lot of respect for them, for what they did for Aydan, between every single one if them that helped, and I'm talking hours here, nearly half a day, every single one of them did their very best to keep him alive!

Over the next few hours they did all sorts to him!

They tried to ventilate him but it didn't happen, a chest X-ray later revealed that the kneading to his chest had caused some holes in his chest so he was leaking air into his chest cavity and he ended up with 4 chest drains and about 10 chest X-rays!

He had canulas put in different parts of his body, including one that went into the bone marrow on his leg, and another sinister looking one in his groin!

The staff were still struggling to stabilise him for transport, we were warned at this point that he was most likely going to die, that he was really really poorly and was suffering with cardio and respiratory failure. Now here was my mistake, on the inside I felt like my life was over, my heart was hurting and breaking so much that I thought I wasn't going to be able to breathe ever again. I hope that any of you readers have never had those words said to you before, but hearing those words when its regarding your own child is unbearable!!!

On the outside I looked calm and unphased, and that was my mistake, because I had to hear those words repeated over and over again, they were trying to drill into me how serious the situation was, I heard, and I understood from the beginning, but I had my concrete face on. I have to be strong for my little man, I deal with my emotions later, when I have time to.

They eventually managed to get him stable enough to move him, but they warned me that he still might die in the ambulance.

That was the longest 45 minute journey in my life as we were blue lighted to hospital in an ambulance.

By now my Facebook was covered in beautiful pictures of people from all around the world who had lit candles for him, and were praying for him to survive! The support from even strangers was over whelming!

But you know what! HE MADE IT!! He got hooked up to a ventilator that helped him and was put on meds to sedate and paralyse him, along with many other drugs, blood, and minerals!

I truly believe that if it wasn't for all the help that everyone did for him that day he wouldn't have made it! I'd like to think that they will read this one day, and will feel appreciated for what they did for us :0)

Here is a picture of my little man in ICU

9th November 2012

Today I have some really amazing video's for you to watch involving his recent progress with his development :0)

The first one is Aydan starting to use words, some aren't very clear yet, but he'd trying!

He can say 'mum', 'daddy', 'no', 'yes', and 'there' 

he has said a couple of other words, but not sure if that's fluke!

here is another video I took today

This is him playing on my iPad

He really loves his Peppa Pig Mrs Chicken game, and has even started to wait while the eggs are hatching :0)

8th November 2012

Aydan is obsessed with toy cars, balls, spoons, cups...

basically things that roll across the floor and he can run after (except the spoons of course, he just likes to hold them!! lol!!)

Here he is lining his cars up on the windowledge...

humm... I wonder what that's a trait of.... ;0)

3rd November 2012

Nanny has asked me to share this picture with you all :-D

Here is Aydan waiting outside for the fireworks to start!

As you can see he was very excited, although not so much once they started going off!! Lol!

He did alright though and only got a tad upset with the really loud ones :0)

29th October 2012

Today we have had another appointment at Leighton Hospital with Aydan's consultant.

Aydan has had his melatonin upped to 3mg a day and has now been put on the slow release capsules, so in theory he will get a nice steady dose of melatonin throughout the night, and it will help him sleep considerably!

His consultant is really pleased with how well he has been doing, and we don't need to see him again now for the next few months :0)

We also have yet more good news!

We were told today that Aydan's seizures will start to settle down and be less frequent once he gets to around the age of 2! 

HOORAY!! :-D :-D :-D

update :- The melatonin works great, it doesn't make him sleep through the night, but he is now only waking up once or twice, so that is miles better than before! :0)

24th October 2012

Today was a VERY busy day for appointments.

In the morning we had an appointment with cardiology, at Leighton Hospital, to check that tumour in his heart.

Aydan giggled his little head off when he had the cold jelly and the probe put on his chest! The cardiologist said it was great that a child was laughing as apparently they usually cry! (Aw!)

Well at last we have some more wonderful news to share with you all!

THE HEART TUMOUR HAS GONE!!! :-D :-D :-D

So Aydan has been officially discharged from cardiology :0)

Our 2nd appointment of the day was up Alder Hey to see the Lovely Dr. Curran who is Aydan's Paediatric Neurologist.

It wasn't a very exciting appointment, but he has had a look at the video's I have of Aydan's random sleep twitching (will add a video below) but sadly the video I have doesn't have many twitching, sometimes he can be twitching constantly for hours!

Dr. Curran has decided to do a sleep EEG on the 19th November, and has asked me to wake him every 2 hours throughout the night to make sure he sleeps during the day. 

Although I have to say that the night time might be fine, but stopping him from sleeping in the hours car journey might be more of a problem....

We also have another appointment to see Dr. Curran in January 2013

Here is the video I showed him

22nd October 2012

I've had to share with you all this picture of Aydan in his favourite place....

a ball pit!!!

Balls are one of his favourite toys and he will spend hours rolling them up and down the floor rolling after them :0)

21st October 2012

Today we have had a major step in Aydan's development and he has started taking his first steps!!! 

:-D :-D :-D 

I am sooo proud of my little man, and words cannot describe how happy I am!

He has shown those Doctors wrong and that he is a very determined little boy and WILL walk!!!

Here is a video for you all to enjoy :0)

11th October 2012

Today Aydan has come down with the dreaded tummy bug so we have been on high seizure alert!!!

I really don't like it when my baby gets poorly :0(

update: Aydan survived the tummy without any seizures! That was such a relief!! :-D

15th September 2012

Today was the day of our wedding!

Aydan was a little star throughout the whole day, mainly because he was asleep for a lot of it! lol! Although he did leak through his nappy within a couple of hours of being there, so he ended up being trouserless for the best part of the day!

Here he is with Daddy and Mummy :0)

13th September 2012

Today Aydan had his regular checkup with his consultant

Aydan has been referred to the community because he is still not talking or walking yet, so they will assess him to see how he is doing with his development.

The consultant also put him on 2mg's of Melatonin to help him with his sleeping as he still wakes every hour to 2 hours throughout the night! Hopefully this will help him get a much better sleep, and rather than being a sleeping tablet works with the bodies natural sleep cycles.

8th September 2012

Today we had some rather confusing news.

We knew back in April that he had a tumour in his heart, but we were told not to worry about it, and that it would have probably shrunk/disappeared by the time he's one, but we've just had a letter through from the consultant advising his GP of medicine increase, and under problems it says 'Cardiac Rhabdomyoma' and we have been referred for a scan in a few weeks, rather than the 6 months originally planed!

I don't know much about these, only from what I skim read earlier, but it doesn't sound great!

I'm keeping everything crossed that it is just a precaution and now that he is 16 months that it will have hopefully shrank/disappeared like they originally said!

His appointment to see his cardiology consultant is at the beginning of October.

I'm starting to think that the poor little man already has more consultants than I have seen in my life, and that is after 4 children!!

I have opened up another Just giving page, and this time donations will go to the Tuberous Sclerosis Association who help fund research into the condition.

TUBEROUS SCLEROSIS COMPLEX - WHAT IT COSTS

£68 will support 1 Hour of TSC Research

£98 will help us provide 1 Hour of Support Services

£507 will support 1 Day of TSC Research

£731 will help us provide 1 Day of Support Services

£2535 will support TSC Research projects for 1 Week

http://www.justgiving.com/AydanTSC

Thought I would cheer this blog post up a bit by adding a picture of Aydan wearing his pixie outfit my friend has made us for our wedding!

Here he is with his big brother!

Don't they look adorable?! :0)

18th-20th August 2012

We decided we needed a 'mini' holiday, so this weekend we packed our bags and went off to Butlins Skegness! (Literally as we only booked it the day before we went!!)

Aydan had a really fab time on the beach playing in the sand, and having a go on some of the baby rides!

I even managed to sneak him a naughty Burger King, as we don't have one round here, and he managed to eat a whole cheese burger AND some fries!! No wonder he's a little chunk for his age!!! 

Here is some photo's of the happy little man :0)

17th August 2012

Today we went to see Aydan's consultant for his regular check up.

His Vigabatrin has been put up to 1g twice a day now, so that is now the maximum he can be on for his weight (30lbs the little porker!!)

There are still concerns over his 'jittering' so an appointment has been made to see his neurology consultant at Alder Hey in October.

As Aydan is still not walking or talking a referral has been made to the community paediatric who will assess where he is in his development. I'm not too worried just yet because he is still only 15 months, and his older brother didn't walk until 18 months or talk until nearly 3!!

His consultant has also prescribed him 2mg's melatonin, which will hopefully help him with his sleeping, and I have to say that he was flat out within half an hour of taking one! (sadly didn't sleep through the night, but it's an improvement :0) )

So a very successful appointment today and a lot has been done/arranged :0D

16th August 2012

Today we took Aydan for his first visit to the beach.

I don't think he was too sure about the feel of the water between his toes!!

Here he is with his daddy :0)

14th August 2012

Here is a picture of Aydan playing in the garden.

He was sooo excited to have found this brush!

I had to share :0)

26th July 2012

Aydan's spots are starting to look much better today! He still has a few coming out, but most of the huge blister filled ones have popped!

His bottom, which was practically made up of blisters, is so much better now and is clearing up nicely now he is back in his comfy little lamb nappies with the fluffy liners!

I often imagine how soft these must feel on his bottom as they remind me of a new fluffy dressing gown :0)

He had a lovely camomile bath after his tea, the spots aren't really bothering him, but I felt I needed to do something just as a precaution!

Aydan gets so excited in the bath and most of the water ends up on the floor and walls!! Lol!!

25th July 2012

Finally had some good news!

The growth the found in Aydan's blood was staphylococcus, which means that basically a contaminant got into the blood sample, so basically we are free to go home :0)

We have been put on high seizure alert for the next week, and have been told that if we are even remotely worried about something that we have to ring the ward straight away, or to call an ambulance if he has another seizure.

Poor little man, I feel so sorry for him at the moment, he looks so sorry for himself, and is just having problem after problem :0(

Fingers crossed we will stay away from the hospital for a while.

Forgot to say that Aydan's vigabatrin is being put up to 960mg twice a day, over the next 3 weeks.

24th July 2012

Today we were told that if it was chicken pox we could go home, but they found something growing in his blood, so we have to wait another 24 hours to find out what that is before they will send us home!

Aydan was VERY grumpy today, and the rash has started to spread across a lot of his body :0(

23rd July 2012

Today was a day of waiting around.

Aydan has started to develop spots all over his body, but because it is a hot day, they are going to keep him in over night to see what the rash turns into.

It's hard to say what the rash is at the moment because on his bottom he has blistery type spots, and the rest of his body he has tiny pin head spots that are bright red!

Other than being miserable and being put back on antibiotics and paracetamol for a high temperature, little man has been fine today! :0)

22nd July 2012

Today was another 'normal' day, we were out doing the weekly shop and Aydan fell asleep in the trolley! Nothing unusual there, but I took a photo anyway, because it was cute :0)

We did our shopping, paid for it, and headed back for the car, and that's when it started...

I suddenly became aware that Aydan was having a tonic clonic seizure, so trying not to panic, I got him out the trolley and rushed back to the car, we made the decision to drive to the hospital as it would be faster than waiting for an ambulance, although looking back it wasn't such a smart thing to do, particularly as Aydan's daddy was panicking and he could have had an accident.

Anyway, we got to the hospital, and I jumped out the car with Aydan and ran into A&E, and started shouting very loudly 'can somebody please help me, my son has been having a seizure for 8 minutes now'

We were rushed into the resuscitation room, and I was quickly joined by a doctor and a nurse, who started stripping him off and doing observations on him. They asked me a million and one questions while working quickly. 

Diazepam was administered into his bottom and the doctor started to get a cannula into his hand, his seizure was still going strong, and I was doing the usual of holding his hand, stroking his hair, and trying to answer all the doctors questions.

Then he STOPPED breathing...

The nurse noticed my panic and quickly mentioned it to the doctor, I kept looking up at the heart rate monitor, and noticed that his heart was still beating, and that his oxygen levels were still at 100% so this calmed me briefly, until the emergency bell was pushed and we ended up with a room full of doctors and nurses.

I was dragged out of the room by a paramedic, who took me to a special room on the side and went to get me a cup of tea. I would normally decline, but decided that if the worst case scenario happened, then I would need the sugar to help with the shock.

I could hear alarms going off, and people rushing around. 

I was on the phone to Aydan's daddy, asking how long he would be before he got back here, as we were waiting for Aydan's nanny to come and babysit, but had unfortunately got stuck in traffic herself!

It's funny what goes through your head during these moments, mine were along the lines of 'no, he's a strong little boy, he's MY little boy, he will get through this.' my other thoughts were directed towards family who had previously departed, and I asked for their help, I asked them to help, and to be with him for whatever the outcome. 

That was the longest 40 minutes of my life.

Eventually things calmed down, and to my surprise, who came to see me? but none other than Aydan's consultant! This cheered me up instantly, because he had taken the time to come up to A&E and had also requested that he spoke to me first!

Aydan was OK and stable, the relief flooded me instantly!!

I was asked a bunch of questions about what we had been doing and whether Aydan had been poorly again. The only thing I could think of, was that we were currently on chicken pox watch, but other than a bit of nappy rash, he wasn't showing any signs of having chicken pox.

I was allowed to go back to the resuscitation room by then, and found Aydan asleep with a tube up his nose and into his belly, and another bigger one down his throat keeping his airway open, with an oxygen mask on over the top. They had helped him to breathe by BVM (bag-valve-mask) method, and he had stopped breathing for 30 minutes!!

Thankfully his heart remained string throughout, so this had still carried the oxygen to the rest of his body.

Apparently it was the diazepam which had caused him to stop breathing.

Daddy arrived 5 minutes later as I was talking to a paediatric doctor and filling in his admission notes.

We were then taken to the paediatric ward and were told we would definitely be staying in over night so that they could try and find out what caused him to have the seizure.

This was Aydan a couple of hours later! You would think that I had made up the whole story I have just written! He's a fighter this one :0)

17th July 2012

Thought I would share some happier pictures of Aydan with you all, just to show that his life is not all doom and gloom :0)

Here he is playing with a sand and water pit for the first time!

I am over the moon because he has managed to stand up by himself!! Way to go little man! You keep proving to us that nothing will stop you! :0)

12th July 2012

Today Aydan had an appointment to see his consultant.

I really like that man, he has always been so pleasant and helpful for us.

Within the half an hour that we were there, he has referred Aydan to a dietitian to look into the ketogenic diet, and helping to get me on a course for some rescue medicine so that we might still be able to go on holiday! :0)

No news about the genetics testing yet, but he is going to try and chase those results up for us.

9th July 2012

Aydan has had his nebulisers taken off him today, and they have given him an inhaler instead. He has to have 6 puffs every 4 hours, which is going to be a pain as I have to do it through the night, and he's still a strong boy that fights me off, but it does mean that we can now come home!

The medicines that he had put up his bottom the other day have given him an awful nappy rash with diarrhoea  :0( so now we have ointments for that too.

We are so glad to be home again now though!!

8th July 2012

Aydan being the little fighter that he is, was straight back to his normal self this morning and was bouncing up and down in his cot, and even surprised all the doctors and nurses :0)

I was told Aydan would have to stay in tonight too, just to be safe, plus they want to keep giving him nebulisers, and hope to eventually wean him off them.

Aydan has taken rather a shine to his little oxygen box and has decided to keep trying to crawl back into it.

7th July 2012

Aydan has come down with a horrid cold today, we have lots of snot and a rattly chest. I thought something might be amiss as he actually slept through the night last night!!

We went out for the day, but he spent most of the day asleep, I figured he obviously needed it, so left him to it.

By late afternoon I noticed that his breathing had become very rapid, around 60 breaths a minute, so I rang up the children's ward. They told me that I only had open access for his epilepsy, and that I couldn't really bring him in for that, but I managed to convince them to see him.

Whilst we were there a doctor examined him and we were told that he had an ear infection in both ears, and a chest infection!! They wanted to start him on a nebuliser right away. Well, he absolutely HATED that! it took 2 of us to pin him down so that he would have it. I tell you, he might only be small, but boy is he strong!!!

It was decided that he was to have a nebuliser every half an hour until his chest started to sound better.

During his 2nd nebuliser he was very quiet, just lay there and let the nurse put the mask over him, I figured he was very tired and still feeling really poorly, so after he had finished I ask where the loo was so I could prepare for a long night of having to help with the nebulisers.

On my return I noticed that something wasn't quite right with him, I went over to him and called his name to check that he wasn't having an absent seizure, as I went over his eyes rolled into the back of his head so I pressed the nurse call button.

When the nurse arrived his whole body had started to convulse, I realised that he was having one of the bad seizures, also known as a tonic clonic seizure (aka gran mal) I realised at this point that anything over 3 minutes was bad, and it had already been more than that!!

The nurse with me pulled the emergency call button and the room was suddenly filled with doctors and nurses, and this is where things start to get a bit sketchy with details, as it all blurred into one long nightmare :0(

The first thing they did was to give him some oxygen via a mask and gave him a dose of midazolam in the side of his cheek (his mouth) they also gave him a paracetamol pessary in his bottom, while trying to get some blood samples from his toes, and putting a cannula in his right hand, the seizure had now been going on for around 20 minutes... They injected diazepam 3.9mg into his cannula, and Aydan started foaming at the mouth. 

I was still talking to him and holding his hand/stroking his hair all the way through, I was absolutely terrified, but I managed to keep it all together for little man!

Aydan still wasn't coming round from his seizure, and by this point I had noticed that there was a crash team stood at the back of the room, and a woman in scrubs with a bag full of medical equipment!! :-O some doctor came rushing in saying that his blood gas was showing at 6.9, I have no idea what this meant, but knew it wasn't good.

The next medicine to arrive was something called paraldehyde, which they injected up his bottom, he did a trump and some of it came back out, but whatever it was seemed to work as he started coming around from his seizure! His seizure ended up lasting from between 40-50 minutes :0(

Another frightening thing though was that even though his seizure had finished, his eyes were still all over the place, the only way I can describe this is to compare him to how you would think of a mentally disabled child, I'm not sure if that is the politically correct term, so I'm sorry if I offend anyone, as it is not intended to offend! But that was how he looked, and a part of me thought that the seizure had done something to his brain.

For the next couple of hours Aydan's eyes remained like this and he just kept chewing everything that came near his mouth. I believe this is because of the drugs they gave him.

They also injected him with steroids and an antibiotic whilst we were waiting for the blood results to come back.

Aydan eventually dropped off to sleep and they put him in an oxygen box over night, with the regular nebulisers.

28th June 2012

Today we ended up having to take Aydan to A&E, not his illness related this time though!!

Aydan had decided that he wanted to try and reach the back of his sisters chair whilst in his high chair, and managed to tip the whole thing over!!

we had a lot of blood from his nose and lip, and he'd split the tendon on his top lip, so we thought we would get him checked over just to be safe, thank fully bar a bit of scabbing and bruising he was alright :0)

26th June 2012

Today Aydan was back at Alder Hey for an eye examination.

We ended up stuck in an accident on the M6 and didn't move for nearly 2 hours, of course at this point we had missed our appointment, but I managed to get my mum to ring the hospital for us, and thankfully, they said that it would be OK providing that we got there before they closed for the day!

When we got there Aydan had lots of toys waved in front of his eyes, and various head cameras worn by the doctors, with lights and very cool looking stuff!

I dont know how they can work out at his age that he doesn't need glasses, but he doesn't thankfully!! No idea how he'd keep them on otherwise.

He didn't have anything sinister that they could see either which was a bonus :0)

Got to go back in a years time for another eye exam.

20th June 2012

Today we got to the ward nice and early, but we still had a bit of a wait on our hands because there was an emergency going on.

Aydan typically fell asleep 5 minutes before his consultant came to speak to us, but it didn't really matter.

We discussed what had been happening, and I showed him the videos. He agreed with me that it wasn't normal child behaviour so he rang Alder Hey to speak to his consultant there. 

When he came back the conclusion was that they are going to up his vigabatrin from 2.5mls twice a day, to 6mls twice a day, over the next 2-3 weeks. They don't really want to start him on another medicine, or change it, until they have tried this one fully. Apparently he can have up to 9mls a day for his weight, so they will still have a bit of room to play if need be!

I also mentioned Aydan's loose stools again, and he is getting referred to a dietitian now which is good.

I have also mentioned Aydan's increasing signs of autism, and his consultant doesn't know much about autism so is going to refer him to someone to look at that too! 

I'm feeling much more happier now that I have got to actually see his consultant and talk things through properly, I'm just now keeping my fingers crossed that upping his medicine will now work for both types of seizures.

I haven't been doing too well with Aydan't wheat/gluten free diet, it's a good job that he hasn't been asked to do it properly yet, but we're all still learning! Both daddy and myself have forgotten and given him a bit of sandwich :0S his sister gave him a cheese biscuit, and I slipped up and gave him some chocolate! Who'd have thought that it would be hiding in there?!! SNEAKY!!!

I have received a gluten free cook book today, and I have decided that I'm going to slowly switch all of us to this diet, because then if we forget he will only have the gluten free stuff off us anyway! lol!!! plus it will be interesting to see how it affects my IBS that I have had for 20 odd years.

On a much happier note, I have caught Aydan free standing a couple of times, so am keeping my fingers crossed that it wont be long till he can walk! I want him to prove them all wrong, and that he will walk!! :0)

19th June 2012

Today I was sat on pins waiting for his consultant to ring.

Aydan was not himself for hours this morning, he just spent the time sitting in his pram watching me do housework, which is not like him at all :0(

During his dinner he had a 5 minute absence, so after dinner I decided to ring the ward.

I managed to speak to his consultant today, and he has asked to see me tomorrow morning to have a proper talk about what is going on. I just hope he believes me!

At least I have the videos to show him.

18th June 2012

Today we had another absence, he also is struggling to sit up on this one.

I rang the ward to try and speak to his consultant but he wasn't working, so they have left him a message and they are going to get him to ring me tomorrow.

16th June 2012

Today was Aydan's nanny's birthday, so we all went to visit her.

Firstly he emptied her paper bin out all over the floor, but then he started to do this 

It looks like he is having some kind of sensory overload? He did it for about half an hour in total, he would get distracted by something, but a few seconds later go back to doing it! I can only assume that he either liked the feel of the fabric, or he was getting over tired, but because of the hand stimming, rocking, head banging and finger clicking that he's slowly started developing over the past few months, that it is starting to look more and  more like he has autism.

I will mention these video's to his consultant when I next see him.

Again today he has also had what looks like another absent seizure, and again this lasted for around half an hour. I have 2 videos of this, and you can see on the last one that he starts to come round from it at the end.

15th June 2012

Tonight we started with what looks like another type of seizure, although I wasn't sure, but recorded it anyway.

At first I thought that he was just really tired, so I put him in his bouncer and gave him a bottle. He would look at me, but it was like he was looking through me rather than at me.

About half an hour later he just suddenly snapped out of it and grabbed the nearest toy to him and was squealing in delight, just like he normally does!

I rang the ward and managed to speak to his consultant, he said that because he has started on a higher dose of medicine to wait until at least Monday to see if that helps.

This is the video

14th June 2012

Thought I would include some video's I've taken over the past week of him having these odd twitches

It's really hard to see as my hand isn't the steadiest

13th June 2012

Managed to speak to Aydan's consultant today, I discussed the random twitching he's been doing lately that reminds me of drinking too much caffeine and he has asked me to put his medicine up to 2.5mls twice a day as a start.

He said that it could be because Aydan has put on weight and he isn't getting quite enough medicine for his body weight now, so he suggested putting it up by 0.5mls to see how he goes on.

I mentioned the fact that Aydan has also had constant loose stools lately and that he's exploding out of his nappy, at least twice a day, and did he think it was connected with the medicine? He said that it could be, but for now I've got to do the whole pot and wooden stick thing and take it to the doctors for sampling to rule out anything sinister!

Oh joy!! Lol

So I have started him on the higher dose of medicine tonight and I hope we get some results quickly.

In the mean time I'm cutting down on his wheat intake to see whether that improves his exploda nappy situation! Just something I'm trying myself, not something I've been asked to try!

10th June 2012

One of my friends has just pointed me in the direction of this diet!

It looks very interesting and certainly needs considering and discussing with his consultant :0)

http://en.m.wikipedia.org/wiki/Ketogenic_diet

29th May 2012

Aydan had his first seizure/spasms in a long while tonight. He was flat out asleep and woke up screaming!

He looked so terrified the poor little man, but he hasn't had one for a while so its likely he's forgotten what they feel like!

He screamed intermittently for about 5 minutes, stopping when he was having a spasm, then screaming again, until they calmed down enough for them to still upset him, but not as much!

The seizure lasted for approximately 11 minutes, but soon went back to sleep!

I presume he had that one because he had gotten too hot and sweaty, he also needs his medicine dose upping because he has put on weight since they started giving it him.

28th May 2012

Aydan ended up going into hospital for a bit today because the chemist failed to get him his medicine in, after a weeks notice, so he had to have some out of their emergency supply cupboard! I wasn't happy at all with the chemist, to say the least!

Whilst I was there I mentioned Aydan's jittering that he's been doing lately, which reminds me a bit of drinking too much caffeine! These episode sometimes last for 5 minutes, when he is awake or asleep. He also gets random flinching from his head and limbs throughout the day. The consultant said it sounds like he needs his medicine dose upping, and that he's possibly having a different type of seizure, and might need more medicine, but Aydan's consultant is away on holiday for 2 weeks so they won't do anything until he gets back!

I also mentioned the fact that he still wakes up 5/6 times throughout the night, but they haven't commented on that.

19th May 2012

It's been a lovely quiet few months here!
He's had a load more teeth come through, and I was worried that they would trigger off more seizures as i have been told that teething can do, but other than spacing out a bit every now and again he's not had any of the spasms! (although will mention the spacing out when I next see his consultant in July!)
We've also just had the letter come through which gives us open access to the children's ward, and lists the name of the emergency rescue medicine he needs to have if he has seizures/spasms which last longer than 30 minutes! (Buccal Midazolam)
Aydan also needs to go to the ward if he has a few seizures (clusters of spasms) very close together for a review of his medicine.
Let's hope he never has to have the rescue medicine!

1st May 2012

Aydan's 1st Birthday

Today we all celebrated Aydan's 1st birthday!

He had a wonderful birthday filled with lots of visits from family and friends, lots of cake, presents and cards! :0)

I love my little man so much, and it makes my day waking up to his beautiful smiling face every morning

28th April 2012

Just been discussing Aydan's sleeping problems with a few lovely ladies on a forum I go on, as he wakes roughly every hour and a half through the night, drinks about 8ozs of milk, then goes back to sleep again! This is making a very tired mommy!

One of the ladies suggested that it might be apart of his epilepsy/TSC, and it had never occurred to me before, but I think she might be right!!

I did a bit of research and it seems that 90% of TSC patients have some kind if sleep disorder, something to do with them not going through the complete sleep cycle and the epilepsy waking them up.

It doesn't really say a lot about what they can do for them, some doctors will occasionally allow them to have sleeping tablets so that the parents can get some rest! But to be honest this horrifies me slightly! I don't want to give my baby drugs just so I can get a bit more sleep! Plus the sleeping pattern doesn't seem to affect him much as he's never really grumpy!!!

Will just have to accept the fact that I have a baby that doesn't sleep much, and try and work it with daddy so we can take shifts, and catch up on sleep that way.

Poor little man! But I expect that more things will start coming out of the woodwork as he gets older, and thankfully this doesn't seem to be an issue for Aydan, just a tired mommy! Lol

Seeing that beautiful smile every morning makes all the sleepless nights worth while :0)