The Hospital Visit

Last week I went to Kings to get my ventilation equipment setup. I was very reticent about staying overnight but I had managed to arrange a carer to accompany me and stay overnight, and I had got a floor stand for the computer so I knew communication would be possible.

The respiratory consultant had gone to a lot of trouble to get everyone upto speed on my situation. When we arrived on the ward the ward sister greeted us by name and showed us to the bed. A few minutes later the physio arrived to escort me to the chest unit where we were immediately seen by the respiratory technician. I was getting the impression that my reputation for being a pain in the arse had preceded me and they wanted no room for complaint. Maybe the system is just better than I have previously given it credit for.

We proceeded to setup a ventilation machine and try out different mask types. The nasal masks were the neatest option and allowed me to operate the eyegaze. However the inward pressure of the air combined with a weak soft pallet and poor lip strength, caused the air to puff my cheeks out and escape through my mouth along with all the excess saliva I have. So I needed a full mask which applied equal pressure to my mouth. This solved the problem but was less comfortable and prevented the eyegaze system from working. There weren't any more options so we agreed to do the overnight tests. The excess saliva was still a problem because although no longer running down my chin, it was difficult to swallow with the pressurised air being blown in. It is a common problem for patients with bulbar (throat, tongue and lips) involvement and can prevent its use.

We returned to the ward with the equipment we had agreed on, and I had some mouth drops to try and dry my mouth. Forty five minutes later there was no change so we tried the ventilation again for half an hour during which some more settings were changed. By the end of this session it seemed to be working ok but I still hadn't tried it in bed, and with the physio leaving at 5 there wasn't going to be a chance to try it. But I had been impressed with the amount of time everyone had spent.

I didn't request to be transferred to the bed until 945 and it was 1030 when I was finally in. They had very considerately provided an air mattress but I knew immediately it was a problem. They are designed to prevent pressure sores by filling alternative pockets with air. But they also effectively prevent you from moving because any pressure applied to facilitate turning is ineffective because the mattress just absorbs it. With no computer yet, I tried to indicate the problem before the hoist and sling were removed. After 5 minutes the penny dropped but the night duty nurse said they would change it the next day. By now the sling had been removed from under me. The nurse returned ten minutes later and with some reluctance offered to change it. But it was now almost 11pm so I couldn't face being hoisted twice more while they changed it.

Between 11pm and 4am I tried the ventilation for three sessions, the longest being an hour and a half. I didn't manage any sleep. The mask leaked quite a lot because of the way I turned my head to the side. The nurses kept saying it was fine because the ventilation pump alarm wasn't sounding although I could feel the air on my face. My carer was more helpful but ultimately the mask wasn't suitable. I gave up around 4am to try and get some sleep, which I managed around 430. So I was extremely pissed off when the nurse woke me up at 5 to take my blood pressure. Why do they do that?

I didn't sleep after that and just waited for the consultant to do her rounds.

I wasn't surprised when she said she wanted to keep me in for another night. I just couldn't see what it would achieve other than two consecutive nights with no sleep. Unless the overnight nurse would make useful changes if there were more problems, it would simply be a case of try it and see. It just seemed a very ineffective and inefficient approach. I declined the offer but agreed to stay until the afternoon to try a different mask, which did seem better.

So I now have my ventilation equipment at home ready for when I need it. I have to say that the hospital did everything they could to make it as easy as possible. But the experience has only reinforced my opinion that the approach of trying something overnight and repeat until it works is not the easiest option for an MND patient although it fits in with hospital practices.