Thursday, December 24, 2009
Happy Christmas to all and to all a good night!
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Monday, December 21, 2009
Went to the hossy last week. It was mainly for a checkup with the phsio about how I had gone on with the Tobi trial last month. To my grumpy annoyance the blows were the same (FEV1 2.85 / 3.8) but she said that was a good thing; the important thing in the first month of the Toni test is to make sure that the volume does not fall, as that would indicate some kind of allergic reaction (to the Tobi) was going on. She did notice I had a wheeze at the end of the spirometry blow, so we discussed me going back on Uniphyllin to help combat it. So anyway the plan is next month to ditch the crappy old Pari Neb and start on the Tobi trial through the iNeb next month. (on a one month on, one month off basis) By then the outpatients will have moved from the Heart area to the new outpatients above the new super Pearce ward. (where it is alleged you can watch Sky Sports and get foot massages...I should be so lucky ;-))
I've also got the notes back from the doctors telling me what my Genotype is: G551D/N1303K.
Other news, Oscar has been really poorly for the last week with a D&V tummy bug, which promptly spread to R, her in-laws, and finally, me, despite washing my hands continuously and rubbing with alchogel afterwards (I now have the hands of a 100 year old man!). Being ill I've not really eaten for 4 days and I feel like that skinny guy out of Twilight (only not as tall)
Anyway, on Sunday it properly snowed in Stockport for the first time in years, so we took Abbby sledging down the golf club, and she loved it. Later on though we nearly got snowed in at the in-laws house when the roads froze and all the cars going through the village couldn't get up the hill to get out. For a while it was like vehicle civilisation had ended and we were back to doing everything on foot! Me and R were serious about settling the kids down at the in-laws and doing a 6 mile snow hike back home in the dark to get supplies and then walk back in the morning, but by the time we went back down to the village, the temperature had risen slightly and the snow was beginning to melt. I was slightly disappointed, but only slightly, because my legs were already beginning to stiffen up after walking for 20 minutes in the snow, so god knows what they would have been like after 2 hours plus. Would have been romantic though, it's great to be outside at night in the snow, everything is so quiet because the snow absorbes all the sounds, and covers all the hard edges, I just love it.
Anyway, everyone seems to be on the mend, so bring on Christmas!
Friday, December 4, 2009
- Chest infections. Oscar was on ventolin and (banana flavoured) Amoxicillin after a virus he picked up last week moved onto his chest and gave him a chest infection. By yesterday his breathing was really-really wheezy, laboured and clicky, you could tell there was loads of gunk down there, and he just wasn't himself, he would play for a minute or two, but then he would roll around on the floor screaming until he was picked up. (carrying a 21 pound toddler around all day is a bit of a strain on the back!) I phoned the emergency doctors and the nurse on the phone who filters the calls before giving you an emergency appointment was a real bitch; I tried to explain to her what the situation was but she kept interrupting and cross examining me like I was in court or something, I felt like saying "look I have CF and I know what a chest infection sounds like, if my chest was as bad as Oscars I would be checking myself into hospital for some IVs!" Anyway, we eventually got referred to a doctor who agreed he had the startings of a chest infection, we then had to dash across town to get to a 24 hour pharmacy in Fallowfield. We then gave him the ventolin and amoxicillin (with a baby spacer to breath the ventolin in with) and in the morning he seemed to be a lot better.
- Constipation / blockages. Oscar was on lactulose for being blocked up, but then he seemed to get things under control. Then after another week or two he went and got really blocked again so he was put on Movicol, twice a day, decreasing to once a day when his bowels settled down.
Here's some pictures of me and Oscar clowning around in the supermarket on the day he had his chest infection. He was fine in the morning while we were shopping then he went downhill really fast in the afternoon. Then he was much better in the morning. Kids eh?