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.