I can't believe its only been 11 days since my last update. Not because it has flown by, but because SO MUCH has happened. It feels like we've had months full of updates! I imagine its going to be like this for the rest of the year - hopefully with less illnesses though...
On Tuesday Dregan was taken to hospital in an ambulance at 9.15pm. It came on so suddenly, he had been fine at school, (they were so shocked when we called wednesday morning because had had a great day!) Tuesday morning he was excellent.
It was a teacher training day on Monday, and he had spent a lot of the day in my new shop with me, and had been really good. We had had a meeting at school with the Neuromuscular Care advisor, school nurse and the deputy head mistress (who is co-ordinating his updated needs since diagnosis, and I have to say, has been GREAT) He seemed himself, no sign of illness.
So, when we got home at 5pm on Tuesday and he was curled up saying he was cold - we were a bit concerned! I had a meeting at 5.30 with Social Services again - well, actually Dregan did. The Social worker was coming round to meet and get to know the boys, and Dregan was curled up in a ball, not interacting at all. So, that didn't go as planned. I took his temp, and it was 38.4, and his heart rate was 133!!! He hadn't moved off the sofa, he was shaking, he obviously had a fever coming on. So, Calpol it was...and wait..... 1 hour later, his temp was 39.1, and we called 111. They didn't understand what we were telling them, and had no idea what Myotonic Dystrophy was, but given his Cavernous Sinus Thrombosis earlier in the year, and his allergy to antibiotics, they sent an ambulance out.
He was in hospital for 2 nights, and his temp/HR/Blood pressure was all over the place. We were in the same room he was in last time, and I felt like I had been transported back in time 6 months. I probably got about 4 hours sleep the whole time we were there. His eye was droopy when he could open it, and swollen when he couldn't and he had a bad headache. His infection markers were 60, which is cause for concern, but becaus he can't take all the normal antibiotics, it was decided to let him try and fight it off. His chest sounded clear, otherwise they would have sent him back to Sheffield to the 'specialists' and to re-scan/X-Ray.
Obviously Pneumonia is one of the biggest worries for people with DM, and causes approx 54% of deaths. They were very worried.
LUCKILY, he fought it off - 2 days of sleeping non stop, and we came home. He now has an 'open door' to the childrens ward, because they can't risk him not being seen, and it being more serious. It came on so quickly, and in April it was exactly the same. In that case, if we had left it even 24 more hours he would not be with us now (terrifying thought!). So, no risks, take him straight in!!
Since then, we have opened our new shop! And held the raffle we have been running to raise money for 'Treetops House'
We had to cancel an appointment with the Physiotherapist on Wed (which we have been waiting years for) as Dre was in hospital, so that needs to be re-scheduled! Unfortunately that means there was no report for his statement review!
Pete met with the Speech Therapist on Thurs while we were admitted, and had a good meeting, luckily Dregan did not need to be there for the initial meeting so Pete could do that without me. My brain has not been working so good anyway, so its probably best I wasn't there!
I had my midwife appointment on Friday - that was nice. :-) All is going well with this pregnancy - No sleep and being the size of a hippo is starting to affect me, but thats manageable!!!
Dre was back at school Monday, and we had another meeting with Social services during the day - they have been helpful so far, so fingers crossed once the inital meetings are over, dregan can get some support from them!!
Statement review at School on Tuesday - that was a looong meeting with LOTS of people present - a blog for another day! Positive meeting though - so fingers crossed everything is implemented as its supposed to be (we do have 12 years of history of that not being the case though, lets see if 'medical' diagnosis changes that!!)
And its wednesday today - I'm exhausted, and going for a bath. Dregan is at Youth Club - so he'll be having a great time now!!!
Believe it or not, thats the SHORT version - there is SO MUCH I could have said, but I'm sure I will get round to it at some point!!
**feeling spun out**
Dregan pulling out the winning number for the raffle!
"Ooooooh!!!"
So sorry to learn that Dregan had such a scary medical emergency. With Myotonic Dystrophy, things can and do come on very fast. We've had episodes with one of our grandsons with the same, a sudden onset of bronchial pneumonia, requiring immediate hospitalization. Antibiotics and steroids seem to help, but these episodes are scary when they occur. I hope Dregan is feeling better soon.
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