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).