Sunday morning and I am sitting here enjoying the peace and quiet.
It has been some week!
Jack has had a
hell of a lot of seizures this week. Monday morning I had to go into the school and explain his new epilepsy protocol to them and answer their many questions.
I had only just got back into the house and Holly was dropped home by the school nurse cos of stomach pains related to
that time of the month. She looked awful so I gave her painkillers, filled up the hot water bottle she handed me and left her to moan and writhe about on the floor til it finally passed.
During this, I had a phone call from the school saying that Jack had to have rescue meds for his seizures and that they were now worried about his breathing so could I come. So off I went, bringing Jack's pep mask with me.
Straight away I could see that he was struggling to breathe but all that he needed to clear his airway was to cough. That's what the mask is for, it shortens the airway and therefore he has to breathe deeper and this causes the phlegm to move up his lungs and makes him cough. I spent 20 minutes there and he was a lot better by the time I left.
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Jack's rescue meds |
In between all this activity I had also been in contact with Jack's epilepsy nurse explaining that his seizures were no better considering that his meds had been put up to the maximum dose and that maybe this was just a blip we are going through, that it might settle on it's own but just needed advice. She said she would talk to the Neurologist and call me back later.
Tuesday Jack had to have more rescue meds and then Crossroads called to say that Jack's carer was in hospital so therefore no care for me this week. My first thought was about poor Marion but as the day wore on, I started realising that this was no good as I am exhausted already!
Wednesday and Thursday was spent jumping every time the phone rang thinking it was the school re Jack requiring more rescue meds.
I picked him up on Thursday lunchtime to take him to Craniosacral Therapy and even arrived early! Believe me, that never happens cos usually the school is running late or I am! Joanna was most impressed but cos I was early it meant she'd to run about getting things ready for us sooner than expected. LOL
Jack enjoyed his session although he had 2 small seizures while there. Joanna certainly put him through his paces but Jack is so funny sometimes cos if he doesn't want to do something, he just wont!
I also heard from Marion, Jack's carer, who texted me and said that it was her gall bladder that was playing up and that she would be home from hospital at the weekend but off work for a further two weeks. Poor girl, she must have been in such pain. Hope she feels better soon.
Friday the epilepsy nurse called to say they planned to add another medication to the two that Jack is already taking and she gave me the name of it so that I could look it up and check out the side effects etc. and then the Neurologist would call me next week to discuss.
BAD MOVE! I have forgotten just how awful the side effects of these drugs are when you read from a list of things that can happen. Logically I know that Jack has rarely had a side effect from his meds but reading the list was giving me palpitations!
I also was on the phone to Jack's social worker telling her that I could not go 2-3 weeks without a carer and that I am getting desperate now for the promised help, morning and night, that I had been given the funding for over 3 months ago! She thinks that she has found a company who can do home care for children....at last....and she will get back to them. I know that she is busy but FFS!!!!
When Jack came home on Friday from school, I assumed all had been well but no, he'd had to have rescue meds again. My stress levels were getting higher by the minute.
Saturday Holly and I took off to the pictures while Jack was being looked after by his Granny Mac. We went to see Mr Poppers Penguins which was a lot of fun and very much a feel good movie. I felt better when I came out of there. Then we stopped for lunch on our way back and then went for a wander around the Findhorn Foundation shop before heading to this lady's house who was selling second hand children's books.
I let Holly choose them as we needed some more stories to read to Jack and we came out of there with over twenty books!
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just a selection |
We headed home to be greeted by Granny Mac with the news that Jack had to have rescue meds AGAIN!
Four times in one week! That hasn't happened in a long time so that makes the decision about adding another epilepsy medicine into the mix so much easier.
He was awake when we arrived home so Holly read one of his new books to him. It was so good that we all stopped to listen and were chuckling away listening to Spud the dog's adventures. Jack was the most impressed of all and he was riveted, never taking his eyes of his sister. It was lovely to watch.
Later that evening I spent training another carer so that if Marion is off sick again, or on holiday, at least I will now have a back up.
So last night, I just fell into my bed and I am hoping today will be a calmer one as my stress levels are pretty high at the moment. Jackyboy is trying his best to go to hospital to see his favourite nurses and I am trying my best to keep him the hell out of there!
Not sure I am gonna win this one :)