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.