CdLS Conference Time

CdLS Conference time
A trip to Swindon to meet with families and friends and professionals. Time to think of all things Rosie but also permission to discuss all things Hillier too.
Even chance to catch up with Nanny and Aunt, Uncle and Cousins. Wonder if we could manage a CdLS Conference in Cornwall to make visiting The other family almost possible too?

We had decided not to take Jonathan and Rosie with us this time. Rosie is just too hard work to be able to concentrate on the talks and be able to relax and chat. No carers available to come with us and so the Hospice was the best place. Jonathan would not cope with the atmosphere of lots of people and sitting at a table and it would not have been fair to even try to make him. So they both stayed in Grimsby. This though made our traveling time considerabley more than it would otherwise have been. Holbeach to Swindon Via Grimsby would not be the route of choice! However being able to relax knowing they were both well cared for and happy made it worth the extra driving.

The journey down was not bad. A little extra traffic at times as it was nearing rush hour and was a friday after all. However what was not so good was hearing the Petrol warning bell "ting" just as we passed the services entrance. Why is it that once that happens the Services become so much farther apart? As time ticked on we eventually saw a Services Sign telling us the next Services on our route were 17 miles away! David decided we would be safer leaving the Motorway and looking for Fuel on an A road. It was a good decision, we found a BP Station and it was just beside a Morrisons too. So we filled up with Diesel then headed into Morrisons for our meal. Much Cheaper, Hotter and Nicer than a Motorway Services. We also stocked up on biscuits and snacks for in the hotel room. It is nice to stay in a posh Hotel sometimes but the cost of food and drink is usually prohibitive. We like to have contingency plans.

We eventually pulled into the Hotel car park at 8.08 PM. I Noted as we pulled in that there was a Beefeater opposite...considering it a good possibiilty for Saturday lunch. We clamboured out and I headed in to book us in whilst the others emptied the bus. Within seconds of walking through the doors of the Hotel Christina and Joseph were together. They met many years ago when both small children and have been friends at each conference since. It is great to see them able to pick their friendship up so easily each time. Joseph's little sister was also keen to join in and have fun and there was non of the bickering between them as a threesome as 18 months ago.

Very soon we discovered that Eve's Oxygen had not been delivered. It had been ordered on Wednesday yet there was no sign of it in the Hotel. The Front of house staff had not heard anything about it either. So at 8.20 we started to make phone calls to find out how we could organise an urgent delivery. NHS Direct were not very helpful. The operator there kept wanting to ask all the usual questions about is she conscious and breathing, is she gasping etc etc. I kept telling her I just needed to talk to a medic from this area to find out who was the oxygen provider for Swindon. Eventually she cut me off. The Hotel man rang the local hospital for me. We were put through to Aand E, they seemed to be very confused as to what we wanted. Did we need to cal an ambulance, should we ring NHS Direct, have we tried the out of hours Doctors service? Eventually they gave us the number for the Out Of hours Service. The lady there was very nice and understood what we were asking but was not sure how she would find out who the suppliers were. I gave her my Mobile number so she could ring me back if she could find someone to help.
In desperation at this point I decided to send a text to our palliative Care team Nurse who had placed the order. I had no idea wether she would answer her work phone at this time of night, it was now 9.38 over an hour since we started trying to resolve this.
I was called back to the Hotel reception to answer a call, this was from the supervisor of NHS Direct Answer Service, They could not put me through to a Nurse without first asking all their Questions, I continued to answer them telling them that Eve was no more ill than normal but soon would be if we didnt get her Oxygen delivered very soon.
Then my Mobile rang with the out Of hours Lady telling me that she had discovered that Air Liquide Deliver to Swindon and gave me the number.
Before I could ring them I had a further text from Our nurse assuing me it was ordered and that she would chase up from her end.
I rang Air Liquide who assure me they have not recieved a HOOF. I assure them it was sent to Air products and they go off to chase that up. Meanwhile I have a call from NHS Direct telling me they have spoken to Air Liquide who have no record of a HOOF and need one before they can do anything. We must therefore contact the Out of hours again and get a GP to agree to send in a HOOF Urgently by Fax!
Meanwhile my Mobile goes again, Air Liquide telling me the same thing, they cannot send Oxygen out unles we have a HOOF Form faxed to them stating that their is an urgent need for O2 and they will then endeavour to get it to us within four hours!
By this time Eve is fitting, she is tired and needs to sleep but needs her ventolator and needs 6 litres of oxygen through that to keep stable. Unsure of what to do for the best I decide to head to the room and try to make her as comfortable as possible. It was at this point that I realised that giving her her evening medication may help! It was also at this point I discovered the Kepra had fallen out of the bag, hopefully in the bus but I was alone now as David had gone to bed in the room opposite and he had the keys. I gave her all the rest of her mediations and considered the possibility that amongst the many other families here there must be someone with kepra! At that point there was a knock at the door and Christina arrived with Joseph and his Dad. Thankfully their little boy Thomas is also on Kepra and they were able to give us the 3ml Eve needed.
Mobile ringing again. This time it was a GP ready and willing to fill in an emergency HOOF Form. He took the details, appologised for the run around we had had and promised to send it as soon as humanly possible. Ten Minutes later I had a call from Air Liquide Promising Oxygen within an hour. Our palliative Care nurse rang me with an update, that her call to Air Product had resulted in an admission that they had thought Swindon was in their Area and had not forwarded the HOOF. I assured Julia that the Situation had been resolved and thanked her for her help.
Within 15 minutes the delivery man was at the door. He was almost as cross as we were, he only lived 10 minutes away and had they contacted him earlier he could have deliered the O2 and sorted the paperwork out later. He was a lovely man, nothing was too much trouble. He was off duty, not really on all but as he lived so close had agreed to do the job, he would have much preferred to have done it at 8.30 than 11.30 though, and so would we!
So by midnight Christina and I were crawling into our respective beds. It had been a stressful evening and I was hoping for some decent sleep.
Breakfast in the morning made up for all the Hassle. Just being there with all our friends old and new, everyone saying hello as they passed, some stopping to chat a while and everywhere there were lots of little Rosie's and a few big ones too. Many we knew already and on or two new people. Everyone though so happy to see everyone else. We were back with family!

The Conference itself was wonderful. We have a new Chairman and although it was strange not to see Alan and Jane it was great to see Jim step up to the mark and take his place. Jim and Debbie have been friends of ours for so long, Mum and Dad to Christina's friend Joseph and to Isabelle and Thomas too. I am sure it was a nerve racking time for them but He did it well.
The Professionals who were there were as fanatastic as always, So pleased to be there, pleased to have the opportunity to talk with parents and mixing socially as friends too.
Sadly we missed our appointment with the one Doctor we really wanted to speak with most. I was given the time of 1.20 pm. I had it written on a form and I had it in my head. I didnt forget the time. The conference broke off at 12.30 to reconvene at 2 pm. There was a sandwhich Buffet in the Hotel for £12.95 a head. There was that Beefeater across the way I had spotted as we arrived the night before I was certain we would get a snack cheaper over there. So we headed off. Joshua and Christina had gone swimming with friends and so we fetched them before taking the short stroll/hobble across the road. It was actually quite funny to see so many familar faces over there. We looked at the menu, checked the allergy chart and ordered our meals, less than £6 a head, bargain! It was only when I glanced at my watch and realised it was 1.10 that I realised 1.20 actually fell before the conference reconvened at 2pm.....too late! I had no way of contacting the people back at the hotel and so I realised I was going to have to be very appologetic on our return!
Wandering back after our very nice lunch we bumped into Debbie and the children also off in search of food. And then we went back to appologise to Dr Gillet and the Charity officals manning the appointments. Thankfully they all found my memory problems hillarious and no one was cross. Someone else had taken our slot and they would fit us in later if they could. Unfortunately that was not going to be possible as we had arranged to go out with David's Mum, sister and family that evening.
The afternoon talks were equally fascinating and I also had a chance for a chat with the neurologist who had been so instrumental in us discovering Rosie's non convulsive epilepsy. She was pleased to know we had things under better control and even more pleased to know we had managed to get rid of one of the anti-epileptic drugs.
Once the main conference was over we retired to our room to rest before heading out with family. Christina however managed to get another invite to swim so one Eve was settled to sleep I had a nice bath and a rest. At 5.30 we headed down to the bus to find the way to our chosen Hotel. It was one we knew when we lived that way but couldnt remember exactly where it was. It was less than 2 miles away and we had allowed half an hour.....mind you when David too the wrong tuning off the motorway and Tom Tom told us to turn right too early it was not so bad!
we had a lovely time with David's family. All of whom seemed well. We enjoyed the food and also managed a sweet each. Then it was time to say goodbye. Christina was keen to get back to the Disco and Faye was ready for bed. Hugs all round and promises to meet again soon.

The evening rolled on loudly, Neither Joshua nor I like the noise and Eve doesnt cope with the lights so we sat out in the foyer, different people came to join us periodicaly and we were able to hear each other out away from the noise a little. The Siblings all gathered out there too and played as if they were with each other every day.
Peter Gillet and David Fitzpatrick came in a little while after us and Peter offered to have breakfast with me in the morning to chat over anything we wanted to chat. We made a date for 7 am!
It was gone 11 pm when Christina and I climbed into bed again that night. I was not long before I was asleep. However between pain in my hands, feet, neck and hips and Eve's alarms going off sleep did not last long. By 4 am I had given up and got up to have a drink, Eve considered 33 a good numbre for her heart rate and no amount of gentle stimulation seemed to bring it much above 50 for long. I resorted to a cold flannel on her face and under her arms and we managed to stabilise at 70. We slowly got oursleves ready for breakfast and as I left the room I called Christina and asked her to get dressed and pack her things away before coming down. Eve and I approached the dining room alone, the Foyer was silent and there was noone else around. Peace at last!
I had chosen a bowl of fruit and natural yoghurt, had a glass of freshly squeezed orange juice poured and a pot of tea brought to the table when Peter arrived. We had a lovely chat, discussed some of our concerns across all the children, had a laugh at the expense of inexperienced junior doctors and generally put the medical world to rights. We were joined first by Christina and then David and Joshua and the dining room slowly filled with familiar faces once more. Peter left us to head home telling us to be in touch whenever we needed even if only to offload! How kind was that?
Then all too soon our conference was over and we had to head off. Leaving the Hotel at 9am we headed off to Grimsby to collect the others. It is always sad to leave our "other family" behind. Especially so this time as we know we are unlikely to make the next too gatherings. First in Cork and then in Denmark. Hopefully we will be able to make the next.
It was 5.30pm when we finally arrived home. A long tiring but extremely profitable weekend.
Thank you to everyone who prayed for our safety.