March - April 2011 – Botox Revisited - Chest Infection & 3 Weeks In Hospital – Secretions Problem Solved!

March began with the second botox injection – and still nothing happening yet.

In general Carol’s condition seemed to plateau – it may have been the fact that we’d stabilised the feeding regime, so Carol was getting the right balance of nourishment each day, but I believe it was almost as if the progression of 2010 had taken Carol’s body as far as it could go and there was very little left to stop working. At this point the only things Carol could still move were her left thumb / forefinger, which she used for communication, and there was still a degree of head movement possible with the support collar in place – but most importantly she still had that fantastic smile!

“No news is good news” would become a bit of a mantra over the next few months – whenever anyone would ask how things were going it was the automatic answer. In fairness most of the time it was the truth!

The beginning of April did catch us out though, and it was very quick. Carol had been back for the third botox injection on Wednesday (it still wasn’t working by the way) and had been feeling ok for a few weeks. On the Friday of that week the carers noticed Carol looking a little flushed through the day and by the afternoon visit she was in real distress. I arrived home to find 2 care assistants and 2 nurses in the house (1 nurse was talking to the doctor on the phone) and Carol struggling to breathe. I could see there was a real problem but Carol was refusing to let us call an ambulance. The PEG episode in Treliske had really put her off hospitals.

After a lot of begging, and me relaying to Carol what the doctor was saying about her needing to be assessed, we finally called the paramedics. The fact that it was late on a Friday meant there was little back-up in the community going into the weekend – limited GP availability means it’s always the worst time to get sick! They did a quick check and called an ambulance immediately – Carol had a chest infection and needed to go straight into hospital.

So we ended up in A&E at Treliske with a doctor assessing to confirm the chest infection and Carol was admitted immediately and put on medication. Having the experience of last year and the PEG I again made sure that someone stayed with Carol as much as possible. Carol ended up being in Treliske for a week (Friday – Friday) and I slept there for 4 of the 7 nights. I’d spent 2 really uncomfortable nights trying to sleep on a chair before they wheeled out a massive recliner from storage, so the remaining 2 nights weren’t anywhere near as bad. The whole family took turns to sit with Carol during the day, so I could show my face at work and Sue, Jeanette and Mags were also a great help during this stay.

Carol was moved around the first couple of days before being settled into a private side room on a ward – this was good from the privacy viewpoint but slightly worrying as Carol couldn’t call for help. There was no way for Carol to communicate with the nurses now as the Litewriter was long gone. We were using the laptop at home and our letters sheet – basically a double sided A4 page with the alphabet printed on it. Carol would look at the letters and we’d build the words – simple but effective, as long as you didn’t forget where you were in the sentence!

Carol was on oxygen and medication / fluids for the first 5 days. They were concerned because they couldn’t get Carol’s blood oxygen level above 95% for any length of time – it kept dropping if they removed the oxygen mask. There was a marked improvement on day 6 and we started talking about getting Carol out of hospital. The doctors were worried about a relapse so insisted that Carol went into Marie Therese House for ongoing monitoring before being allowed home. MTH is a small unit that specialises in care for illnesses like MS, MND and also brain injuries – it was also the place where we’d had those early appointments with the physio team – the place where Carol had initially not wanted to go. At this point though we didn’t have much choice in the matter - it was move to MTH or stay in Treliske – as I said not much of a choice.

However, on a positive note one major breakthrough did occur while Carol was in Treliske – and it was a really important one for Carol – we found a solution to the secretions problem at last. It came from a discussion with one of the many doctors we saw over that week after I explained how the problem had been affecting Carol for so long. He prescribed Glycopyrronium Bromide injections – we’d actually tried this many months earlier in tablet form and it hadn’t worked. But this time it was like a miracle – within 20 minutes of the first injection the secretions stopped! We monitored it closely over the next few days but daily injections did the trick – hallelujah indeed. This would continue as a permanent fixture, being administered via a syringe driver over each 24 hour period, to minimise the use of injections and ensure the effects of the medication would not wear off.

Carol was moved to MTH on the Friday, Mags went in the ambulance while I followed in the car. I have to say I was very impressed with MTH, this was a side we hadn’t seen before as our previous visits had been straightforward specialist appointments. There are only 12 rooms, all of them private, so the patient / nurse ratio is much better than Treliske. Dorrie welcomed us and took all of Carol’s details, including medication, mobility, sleeping and feeding information. There were no real restrictions on visiting so Carol could have company pretty much all the time. We all spent days with Carol - Sue, Jeanette, Mags, Tess and Steph all visited and Theresa also came down to see her which was really nice.

As each day passed Carol felt a little better and started to ask about coming home. Timing is everything I suppose and it turned out that the next weekend was Easter – which meant there would be limited cover in the community for a longer period and the medical team were worried about sending Carol home just in case she hadn’t fully recovered. Carol wasn’t happy about this but we needed to listen to the doctors so Easter was spent sat in the hospital.

Carol eventually came home the following Friday – 3 weeks since she had been admitted into Treliske. I felt Carol was weaker again but it was getting harder to judge as I’ve already said – nothing was really working but it was just my perception of further muscle wastage, and what appeared to be less mobility in Carol’s left hand.

There’s no evidence to suggest that Carol had a reaction to the botox and that brought on the chest infection – maybe it was just a coincidence - but we’d found a solution to the secretions problem that worked long term so there was no need to go back and try it again.