Well I left you all on a bit of a cliff hanger really, but you cannot imagine how busy my life has been this past year, how many appointments we've had, or people we've seen!
Let me start by first telling you all that Aydan's PEG operation was successful! It wasn't very nice, and he was in some pain for a fair few weeks after having it done, but after catching MRSA it eventually healed up nicely!
After lots of physio we were eventually allowed out of Alderhey and sent back to Leighton hospital at the beginning of April, where we received a very warm welcome back from the staff there! They were all very pleased to see him, and one of the nurses who was with him the night of the ordeal came in to work and came straight to see him!
We finally, after a total of 5 months, got to come home after spending only 3 days at Leighton! I will admit that it was a little scary at first as Aydan was surrounded by many new things! He still required oxygen, he had a sats monitor, and a feeding pump! It didn't take long to get used to them, and if I'm honest I actually slept much better at night knowing that the alarms would go off if something was wrong! Whereas before we had nothing!!!
Aydan at this point, although he had come a remarkable way, much farther than anyone could have hoped, was still a shell of how he was before! I stopped watching old videos of him because it would remind me of how he was before, and it would upset me! It still upsets me now! He could still laugh and he would briefly look at you, but for the most part he was trapped in his own little world.
We were not at home long before we made the decision to go on holiday and get away from it all. It was the best holiday of my life, and being away from hospitals and appointments, and to just be a family again was what we needed! Aydan was so happy and smiley, and enjoyed every minute!
Not much longer down the line and Aydan caught a chest infection so was back in hospital. :0(
The good news was that we we're let home again after being given antibiotics, as we had everything we needed at home anyway and was safer because of fewer bugs!
Aydan had frequent home visits from physiotherapists, occupational therapists, dietitians, health visitors, speech and language therapists, and over the past few months he has become stronger and stronger! We managed to get him back having hydrotherapy classes back in September and he is tolerating being in the water more and more.
Some point a few months ago, I can't remember when, he went back to Alderhey to see the respiratory consultant. Aydan had decided a few months back that he didn't want his oxygen anymore and kept pulling his nasal cannula out!!! He was tolerating being on air really well! The only time you notice a problem is when he is lying on his right side, he is squashing his good lung and that can make his oxygen levels in his blood drop :0( other than that she was really thrilled.
Sadly a chest X-ray confirmed that his left lung was still damaged and probably always will be now. He has now acquired the 'chronic lung disease label' because of this, but considering he isn't having oxygen at the moment that is a really positive sign!
He has also recently had a hearing test and eye tests, and he has passed all those with flying colours :0)
Aydan is currently having child development sessions with various people and this is their plan to help crack Aydan out of his shell and try and work out how we are going to start communicating with him again as he can often get really frustrated!!!! He loves these sessions immensely and the staff have to run around chasing him! It can be really funny!!
Aydan is no longer having milk through his PEG and hardly sees the dietician at all anymore because he is back eating and drinking pretty much normal again now!
Not that long ago Aydan got to see his neurologist (Dr. Curran) and he was absolutely thrilled with Aydan's progress that he has been discharged from neurology!!!! So exciting! Let's hope there's no more developments for him!
Well after all that exciting news I will round it all up and give a brief explanation of how he is now! He's due to go for a PEG change in the next couple of weeks, he will have a smaller one called a MICKEY button.
Aydan still cannot walk, but he tries so hard and can definitely cruise :0) he is still very much in his own little world, but the breakthroughs are more and more often and he is starting to babbles a few very nice sounds out! :0)
So there you go, a very short post describing in brief the past 10 months :0)
I shall finish by adding a picture of him!
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