November 2011 - Baby’s First Birthday – Heart Racing

We’ve just read the whole blog and I have to say we’re both very pleased with how it reads. Yes there are a few details missing here and there, I forgot to mention that Carol was fitted with a catheter during that 3 week hospital stay back in April and it’s been there ever since. We decided that was the most sensible option as it removed all of the additional hoist transfers Carol would have to make throughout the day (wheelchair / commode / wheelchair etc). There was also a great App that we bought for Carol’s Iphone early in 2010 – ProLoQuo2Go – it’s an American software programme that uses pictures and text to aid communication. It was simple to use and easy to carry around, being on the Iphone – Carol really liked it as an alternative to the bulkier Litewriter.

When I look back to the beginning of 2011, having been through everything that 2010 had thrown at us, I must confess to being less than positive about what this year would bring. I remember talking to Bec and saying that if Carol made it to Christmas we’d be very fortunate. The disease is such that I had no evidence to back this up, but I was looking at what would happen if we had another year as aggressive as 2010 had been – now I’m thankful that hasn’t come to pass but I was really just trying to prepare everyone.

One thing I didn’t think Carol would see was our beautiful Veronica Mae’s first birthday – but here we are now into November and Carol is still smiling and battling on. I think having baby in our lives has made a massive difference to Carol – again there’s no medical proof of this but to see the way Carol’s face lights up whenever baby is around is evidence enough for me. As I’ve said earlier Carol has always been a fantastic mum and the children have always been first and foremost in our lives – and baby has brought the light back when times were looking dark.

It’s scary to think that first year has passed already but 5^th November arrived and we had a house full of presents. The animal train wasn’t quite the hit at first but the Smart Trike went down very well, especially when James and Samm took Veronica for a spin around the boating lake on it. The rocking horse and animal zoo will come into their own at a later date I’m sure – there was just so much going on and it was a little overwhelming. We didn’t know it at the time but baby wasn’t well on her birthday, a doctor’s visit was required the next day and she was diagnosed with a virus that knocked her out for a few days – it was quiet in our house the next week without her there.

Carol’s not been feeling too well this month either, I’ve already mentioned how tired she’s started to look and that hasn’t changed – if anything it’s worse. But Carol has been experiencing heart palpitations on a daily basis for about 3 weeks now. These have happened in the past but never with such regularity, and it’s stressful for Carol when her heart begins to race. We had a problem with the commode a few weeks ago, where Carol was starting to have trouble breathing when sat upright for any length of time. This was resolved with an OT assessment and delivery of a new commode (with a tilt function) but the palpitations have continued. There’s no warning, you just see Carol’s facial expression change and her breathing becomes shallow – and then you can see and feel the pulse racing.

Initial doctors’ visits didn’t find anything, chest was clear, blood pressure and temperature ok – Carol was treated for a UTI just in case but that didn’t stop them happening. We resorted to using one of the medications that Carol had been prescribed as a quick fix, it’s actually to help her relax and sleep better so gives the right end result, but it wasn't the solution.

It did help to calm Carol down when the palpitations started but also made her very drowsy. Now you would think that would be a help when it came around to bedtime but that’s not the case. For reasons we’ve yet to work out Carol’s sleep is worse since all this started – even the Clonazepam at night isn’t doing the job anymore.

Dr Anderson has visited again this week and everything still seems to be ok – heart, chest, blood pressure – the doctor thinks it’s anxiety, so in reality Carol’s having panic attacks. Looking at how these episodes develop that does make a lot of sense and new medication has now been prescribed. Carol’s prescription list currently has 31 items listed – just to give you an idea of how many different things have been tried over the last couple of years or so.  

When I started out to write this blog I prepared all the post titles so that I could plan how it would look – and there’s one I’ve still not got round to typing. The title is “what about me?” - I’ve spent the last few weeks bringing Carol’s journey to life so would it be selfish to write a post about me? Will I be able to get the wording right so I don’t sound like an idiot – or worse? Does anybody want to read about me when Carol is the one going through all this? Maybe the carer’s side / my side needs to be out there to complete the picture – both the positive and the negative. It’s not going to be an easy post to write but I think I need to do it.