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.