11th February 2013

Today we got to meet the Gastro team again.

They have managed to book Aydan in for a PEG tube (tube that goes into his stomach through his belly) and this operation will take place on the 28th of February.

Although this sounds a bit drastic, it will actually make his life so much easier, and as he was on a ventilator for so long they expect it to be a while before he can drink liquids again!

To prove why having a PEG fitted will be better for him, Aydan decided to pull out his NG tube again today!  

Little Monkey!!

Daddy was very excited to report that Aydan had followed him briefly with his eyes.

This is very exciting as we have been warned that he may be blind after all the brain damage he has. 

8th February 2013

Aydan received a very special package from a charity called Pop 'N' Grow today.

This charity makes special pajamas for special children

As you can see in the picture he has popper in his sleeves and sides which is great for children who need cannulas and other tubes etc.

You can see this charity here

http://www.popngrow.co.uk/

I have also managed to take this amazing photo of all the children together.

Aydan looks so happy :0D

7th February 2013

Today Aydan's withdrawals have been awful again.

It seems that some doctor thought it would be a brilliant idea to stop him having any sedation during the night 'because he is asleep anyway'

So now we have had him wide awake for hours :0(

His heart rate has been scaring me and has been jumping between 130 and 255 most of the evening, and he is clearly very unsettled.

I have had a word with them and have said that I only want the pain team assessing where he is with the sedations now.

Today he has also had a mysterious rash appeared and has been really puffy, and his oxygen need has doubled :0(

My poor little squish! 

It's just one thing after another at the moment. 

6th February 2013

Aydan had a very special treat today...

DAISY THERAPY!!

You can see on his picture how happy he is that she is sat next to him, and his body language was great!

There was lots of arm movement, moving his eyes and, well, he just looked so happy it was amazing!!

:0D :0D :0D

Speech and Language therapist has been to see him today and has decided that he is definitely not ready for food just yet.

At least I feel like someone isn't trying to rush him!!

5th February 2013

Another day, another EEG

but LOOK!!!

he's wearing pajamas!!!

His expression is saying 'I look real cool'

:0D

4th February 2013

Today was a very exciting day all round!!

My 2 older children have managed to get into a local school and have started today.

This means that we only have Daisy to entertain during the day now, and as you can see she has been washing Aydan today. :0)

She said 'I want to help you look after Aydan when he gets home.'

Bless her! :0D

I managed to get sneaky cuddles this afternoon.

I pulled the curtains around us, and then climbed into bed with him.

There was lots of happy moans from Aydan and it was only a couple of minutes before he went sleep! :0)

3rd February 2013

AYDAN HAS BEEN MOVED OFF ICU TODAY!!!!

:0D :0D :0D

He is now on Neurosurgical HDU.

Here he is in his new home!

1st February 2013

*SIGH*

Another day, yet more bad news :0(

Aydan's neurologist has taken me into a side room to talk to me about his recent MRI scan.

It seems that Aydan has lost a lot of brain mass from the previous MRI they did 2 weeks ago, and they believe this to be conclusive of cerebral atrophy. :'0(

Basically it means that his brain has wasted away and shrunk quite a lot.

This means that he is a lot more brain damaged than we first originally thought, and sadly there is no cure for it, we can only hope it improves with time.

I was initially upset over this news, but when I went to see him again he was smiling his head off and cooing at Peppa Pig.

At the end of the day so long as he is HAPPY then that is all that matters to me! :0)

31st January 2013

Aydan is still doing amazing off the ventilator.

Unfortunately thought he seems pretty wired and hasn't slept since he was extubated!!

I suspect it's withdrawal as you get a lot of insomnia with that.

His temperature is much more stable lately and has been around 37.5!!

I knew that being on that cooling mattress for so long was bad and that his temperature would even out on its own if they just left him to it! :0)

Mummy's instinct win again!! ;0)

On another note we have been told that now he is off the ventilator that we can have as many cuddles as we want, but we have decided to take it slow for now because he needs to practise his breathing again.

30th January 2013

I am pleased to announce that Aydan has now officially been EXTUBATED!!!

Here is a picture of him wearing his nasal specs :0)

He is now on a special machine called 'optiflow' which is like high flow oxygen through his nasal specs, but they warm it up and humidify it for him so it's not too painful on his nose.

The next 48 hours will show how well he copes, and if he makes the 48 hours he should be headed the right way :0D

28th January 2013

Today I walked onto the ward to see that Aydan had some 'boxing gloves' on his hands...

apparently he has been a little monkey and has been trying to pull out his ventilation tube again!!

I can't say I blame him really!!!

Aydan had his micro bronchoscopy this afternoon, and I am pleased to say that bar a tiny amount of swelling, and some granulation on his vocal cords, everything is looking good for extubation.

They have decided not to do it today though and have been giving him some medicine which will help to reduce the swelling in his throat first.

I was very excited this evening as he actually managed to turn his head to look at me!! :0D

my little man really does make me proud every day! :0D

27th January 2013

Nothing exciting really happened these past couple of days so I thought I would just show you a picture.

:0)

The ward this end is pretty much empty and very quiet, which is quite nice!!

I have been talking to one of Aydan's consultants today and there are talks of sending him for a micro bronchoscopy, which I believe is like a normal bronchoscopy, only a lot smaller which will allow them to go further into his lungs.

They think he might need a tracheotomy because of how long he has been on a ventilator for.

They think his throat might be quite swollen and floppy, so depending on the results of the micro bronchoscopy, depends on what they will do!

Possibly extubation  (removal of lung tube) depending on how good everything looks.

25th January 2013

So happy today!

Aydan's (mummy's) necklace has arrived and it is beautiful!

The hand print is Aydan's actual hand print, which they have shrunk down and put on this pendant for me :0)

Aydan had to have another MRI done today.

They wanted to check to see how the brain damage was from 2 weeks ago.

Because he is full of cold at the moment he didn't cope too well with the general anesthetic and has had to be put back on full ventilation :0(

I asked a few people about his MRI results but no one was able to answer me other than they think everything was looking the same as before.....

At least they have managed to put his NJ back in while he was under the general anesthetic!

Apart from that he has been asleep most of the day.

24th January 2013

Today Aydan has been visited by some people from the Rheumatology team because of his high temperatures, he's still around 39.5 in between his paracetamol dosses, and he isn't allowed regular ibuprofen because apparently it can affect your respiratory system, and we don't need anymore problems there!!!

They have taken some bloods and have been asking a million and one questions.

Aydan has also managed to pick up another cold, they have been suctioning lots of horrible green sticky stuff out of his lungs.

I'm hoping that this doesn't set him back anymore!

Little man has been very naughty tonight and has pulled his NJ tube out!!

I shouldn't be laughing but it means that his hands are getting much stronger :0) 

23rd January 2013

Well that nurse was back again last night :0(

and guess what?! she put him BACK on cooling again, despite the nurse sticking up for me last night and asking her not to!!!

his hand and feet are back to ice blocks, and reading a temp of 25 degrees Celsius, and his core temp was right up to 39*

Now that might sound confusing to some people reading this, but if you cool someone too quick and too much, first off you get your hands and feet going cold, which sucks the blood away to your core making your core temperature higher, and secondly if its constantly cooling you, when you go below your bodies normal temperature, your body then starts to fight the cold and makes it hotter to compensate.

I hope that made sense!!

Anyway, that is the first time I have ever had to complain about a nurse, and I have asked that she never looks after Aydan again.

I'm sorry, but making a child lay on something that feels like a block of ice is just cruel, and bordering child abuse in my eyes!! it wasn't necessary!!

I was asked if I wanted to put in a formal complaint, but I said that as long as she doesn't have Aydan again then I wont bother.

I have also requested that Aydan is to be taken off the cooling mattress altogether, because my theory is that his temperature will never be 'normal' if he doesn't learn how to control his own temp again.

So far going well.

He's spiked temps of around 39 all day, but paracetamol has helped dramatically keeping it down.

so.....

Aydan got a haircut today...

but don't worry folks it WILL grow back!!

22nd January 2013

Now it's not often I grumble about the Aydan's care, particularly considering how wonderful his staff have been on ICU. But today is a grumble day.

Last night one of the nurses was a bit rude towards me.

First off she started having an argument with me over the cooling mattress. Now normally he is on something called normothermia, which basically helps to keep his temperature around a normal range. Once his temp hits 37.9 the mattress will pump cooled water into it to help bring his temperature down, but once his temp hits a certain level it will change the water to either room temperature or warm depending on how cool he went.

Now this nurse insisted that it was on 'cooling'.

I don't like the cooling setting, it makes the mattress feel like a sheet of ice and doesn't switch off when he reaches a normal temp, it just keeps cooling until it hits the temp you set it at.

The nurse unfortunately didn't speak English very well, and although I tried explaining it to her that normothermia was OK, argued back with me and obviously waited until I had retired for the night and switched it onto cooling.

Aydan's poor hands and feet were like blocks of ice when I came in this morning and despite having a temperature around 37.5 all yesterday his temperature was now around 38.5....

cooling setting FAIL.

ALSO she was very rude to me and told me to move my chair around the other side (where I couldn't see Aydan) when I wasn't in the way.

20th January 2012

Aydan had another chest X-RAY today.

It is a MIRACLE!! his left, lung, although still slightly white, has pretty much cleared and the blood around his lung has virtually disappeared!!!

I am soo happy!! :0D

19th January 2013

Today I managed to finish Aydan's crochet blanket that I have been working on for him.

He definitely has the best looking bed on the ward now :0)

Here is a very happy moment of daddy getting to have his first cuddles in nearly 2 months!

At the time of seeing this photo I wasn't aware of Aydan not being on the ventilator, but daddy later informed me that they had put him on a special thing called a Swedish nose, which from what I can gather is just a filter to stop particles in the air going directly into his lungs...

Well by the time I went to visit him it was 4pm and I could hear all his machines alarming as his sats had plummeted and he was really struggling to breathe, his lips had turned blue and he wasn't doing very well.

He'd only been on the Swedish nose for a few minutes, but it obviously hadn't helped him at all!!!

Needless to say he ended up back on ventilation and was still struggling.

I told his consultant of the day (I've only seen her twice) that I was not happy that they had put him on the Swedish nose, and he obviously wasn't going to be ready for it as he had only just struggled to come off a ventilator.

I found myself eating my words later on during that day, because a chest X-RAY has revealed that his ventilation/lung tube has been pushed in too far, and has been going into his right lung. His left lung is nearly a complete white-out again, and the collection of blood around it had built up again!!

To say I am heartbroken is the least!!

WEEKS we have been on this ward trying to get that left lung back healthy again, and now its back to being a white-out again. >:0(

He ended up having some of the general anesthetic gas (which stank and made me feel dizzy and have to leave the room) to have his tube pulled out a bit, and he has been put back on diuretics to try and suck out the blood around his lung.  

17th January 2013

Today they have managed to get him off a ventilator and get him on something called a CPAP with assisted breathing!

It's basically him breathing by himself, but with a gentle flow of oxygen going into his lungs, and when he takes his own breathe the machine gives a gentle push to help him.

His CO2 levels have gone up a little bit, but he is doing so well!

This is one step closer to getting him off ICU. :0)

16th January 2013

Today wasn't such a good day :0(

Little man has been having awful withdrawal symptoms and has been doing lots of gurnning, grinding his teeth, and VERY irritated hand movements.

It's really horrible to see as he looks like he is in a lot of pain.

The doctors assure me that he isn't and that he wont remember any of it, and that it is more painful for us to watch than it is for him.

He has been trying really hard all day to open his eyes though and I have managed to get a pic :0)

14th January 2013

Aydan did so well and physio today and did such an amazing job at trying to lift his head!

I am soooo proud of him!

They also had him standing briefly for a couple of minutes with the aid of the physio and a nurse :0)

Here if the video of him trying so hard to lift his head up.

He has also been a cheeky little man tonight!

When I went to say good night to him, I thought he was raising his hand to say good night, but oh-no! He went straight for his ventilation tubes and tried to pull them out!

Little monkey :0).