Today was one of those days I wish I could erase out of my memory, but sadly most of it is burned in and I'll probably never forget even when I am old and senile!
I'd had an awful night with him, his heart rate kept going up to 200 beats per minute (BPM) and he had a raging temperature. He had a monitor stuck on his toe and it kept triggering off an alarm (which to be honest nearly got thrown up the ward!!) He'd also had diarrhoea a number of times in the night and I suspected he was feeling rough from his anaesthesia yesterday.
None of the night staff seemed concerned though, and none of them seemed to do anything about it. (I found out later on that day that they had rang the oncall doctor but I never knew what had been said!)
As soon as Aydan's named morning nurse came on shift, she took one look at him and carted him into a side room. She said he looked really poorly and wanted to send off a stool sample for testing as she thought it sounded like he'd picked up a sickness bug!!
An hour later and some calpol, he was trying to sit up again and was giggling away at CBeebies on the tele, and as soon as daddy arrived I rushed off for a shower.
Not long after being back at the Ronald McDonald house I had a phone call off daddy to say that the consultant had been in and they had the results of his MRI scan, but because I wasn't there he would call back at 1pm after he'd been to a meeting. I was also told that they were doing another EEG on him and that they were going to keep it on him for a while in hopes that he would sleep.
After my shower I nipped to the shop to get some sandwiches for everyone, I wasn't really hungry, but thought I'd best eat something.
As I arrived back in the room my heart did a flip flop, the nurse told me that he'd taken a turn for the worse while I was gone and his arms and legs had turned purple and floppy and he wasn't responding. The nurse had quickly put a drip up and rushed a bag of fluids down him as she suspected that his sickness and diarrhoea had caused him to become severely dehydrated. He was halfway through his second bag of fluids.
He looked like death
I've worked in a couple of nursing homes, I know exactly what death looks like. I reached out to hold his hand and it was cold and clammy.
I told him that he was a strong little man and that he was going to fight this bug, that he wasn't allowed to leave us just yet. I cant remember what else I talked to him about, but I just kept talking, it wasn't long after but colour started returning to him again and he started to stir. I couldn't describe the relief I felt.
This was him just as the colour was starting to return to him
(it makes me sad to look at this photo)
It wasn't long until they came to take the electrodes off him and whisked off with the machines to look at the results.
It was around that time that the consultant also reappeared.
It was confirmed, Aydan has Tuberous Sclerosis Complex, they had found several large non-malignant tumours in his brain, and he guessed there are probably thousands of tiny little ones.
He told me that it was a genetic condition and that because of his age we wouldn't know how severe it would be, but to expect a life of learning difficulties, physio, constant tests, autism, and general health problems.
But I haven't given up hope, he looks and acts just like any other boy would his age, so for now his prognosis looks good.
They told me that they were waiting for the results of his latest EEG to confirm what type of epilepsy he has, and were hoping to start him on the medication for it right away.
Not long after, another consultant came in to tell me that the EEG had picked up Hypsarrhythmia (Chaotic Brain Waves) and that the seizures he was having were known as spasms, also know as infantile spasms or West's Syndrome.
Aydan slowly recovered throughout the day and started to come around.
A nurse came in to tell us that he had picked up the bug Rotavirus, so at least we know what had caused him to become so poorly so quickly.
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