Nil By Mouth

It’s been a topsy turvy few weeks but between the jigs and the reels, as my Grandad used to say, the PEG is in and we are home. Originally scheduled for Monday 20^th January, but cancelled then, and again the following week, eventually the procedure was carried out last Wednesday.

The cancellations felt frustrating for us both but especially for Roch, as he had built himself up each time, prepared to face what is an MND milestone. It felt like a blow for him. We did discuss this with medical staff and made our feelings known. On each occasion the procedure had been cancelled at short notice as emergency cases had taken precedence. We understand now how complex it is at the Royal Brompton to manage beds for the procedure. They need a bed for the preceding overnight sleep study, a bed in ICU and a bed in a High Dependency Unit before and after the ICU stay. In the end it was decided to organise two separate admissions, the first for the sleep study, to assess Roch’s condition with regard to his breathing capabilities and the second for the actual procedure.

The sleep study was carried out the week before the procedure for PEG insertion and on that occasion it was possible for me to stay with him, which, I think is always a comfort, for both of us. We expected admission for surgery on 18^th but in fact the long awaited call came on Tuesday morning, 4^th February. It couldn’t have been timed better – right at the beginning of the tube strike. The surgery was scheduled for 10am on Wednesday 5^th and he began his stay on Foulis ward in the Fulham wing of the hospital. Kate and I stayed to keep him company until about 9.00pm and helped him with his meal at teatime. That was the last solid food permitted and before we left, they set him up on a drip to keep him hydrated overnight. He was on the ward with three other patients, all of whom were friendly, helpful guys. Kate and I embarked on our three bus journey home, happy that he was fairly comfortable and pretty confident that by the time we saw him again, he might even have had the procedure.

Wendesday 5th

Next day I woke with the shadow of a migraine and we worked out a better way to get to the Royal Brompton. Taxi.  Roch had sent a text to let me know that the procedure was to go ahead as planned and when we arrived on Foulis ward, there he was in his hospital gown, attached to the drip and waiting. That was at 10.30am. It wasn’t too long before a debate began between the nurses, who came to me for my opinion. They had to get Roch to the Sydney street wing of the hospital to a High Dependency ward to be prepped for surgery and were concerned about the safest mode of transport. Could he manage transfers in and out of the wheelchair safely? Or was it best to arrange a stretcher and transport across via ambulance? Eventually it was decided that stretcher was best, at which point a nurse came in to say that no transport was available. So between us, Kate, a nurse and me, we managed to transfer him into his wheelchair, hospital gown modestly held together behind him – only to find that in fact transport had arrived and two ambulance people were standing in the ward, looking at us in an enquiring manner. A short conference between staff ensued and the result was a transfer from wheelchair to stretcher. Just as well, really, as it had begun to rain heavily outside. We travelled down in the lift together and waved goodbye in the street. He made a frail, vulnerable little figure, as he was wheeled on his stretcher into the ambulance, accompanied by a very kind and helpful nurse who carried his ventilator bag.

Kate and I headed off through the foul weather to a nearby café, where we sought refuge and sustenance. We weren’t sure how long to stay away and I was conscious of a pull of nausea directly connected to the developing ache in the side of my head. He had been transferred to Elizabeth HD ward in the Sydney wing and so we headed over there at about 2pm. Two patients to each nurse so a good ratio. There we waited, making small talk and watching the activity around us. Later in the afternoon the anaesthetist arrived and discussed the procedure with Roch. They gave him the option of having a general anaesthetic, an option which he gratefully accepted. The doctor was careful to make him aware of one way in which the procedure could go wrong. As he walked away, saying ‘See you soon, then’, Kate and I looked at each other and hoped Roch would escape a perforated bowel. Yeah, thanks for that.

At around 4.30, he was wheeled away for surgery and Kate and I were encouraged to go down to the canteen to eat something. By the time we got there, all I wanted to do was lie down. So I put two chairs together and put my feet up. At this point I decided there was no going back and so I downed my triptan medication and hoped to doze. The canteen was almost deserted but I was aware of an older couple sitting at the next table. We must have been there about an hour, when the lady approached us, offering us a Metro newspaper. She explained that her young grandson was just out of surgery, that her daughter had called from the ward to say that they could go up to see him. I don’t know what was wrong with him, but she said he’d had something like eight operations so far and confided that the Royal Brompton had, quite literally saved his life. She wished us luck. She knew we were waiting for a relative to come out of surgery. I wasn’t really up to much conversation but I was grateful for her friendliness and concern.

At this point I figured it was safe to stand and test my head. A visit to the ladies assured me that the triptan and rest had gone some way towards seeing off the migraine and we decided to head back to Elizabeth ward to see where Roch was. At the nurse’s station we were told that it was all over and that he had just been brought to Intensive Care, as a precautionary measure, where he would stay all night and the nurse suggested that we go to the canteen to eat something as ICU would not admit us for at least another half an hour. (They are very keen on making sure the relatives are fed). Heigh ho, we didn’t bother saying we had just come from there, but went to wait in the corridor for half an hour. Roch’s Elizabeth ward nurse saw us there and came over to say that there was a waiting room for relatives outside ICU. She advised us to wait there, and let the ICU staff know. Entrance is password protected but there is a phone on the wall and relatives are asked to call an extension to announce their arrival. We did this and then waited to be called. Not long after this, a pleasant man emerged to bring us through and in we went to see the patient post-surgery. In ICU it’s one nurse per patient, which was very reassuring. Roch was a bit groggy and sore but able to talk to us. It was a relief to know that it was all over and done with at this point.
We had yet to experience the aftermath at home. We stayed until visiting time was up and then made our way home by bus and train this time. I rejoiced that it had gone well for Roch and that I had managed to be there for him all day, thanks to triptan medication. All I could think of was bed.