When Tired takes on a whole new meaning!

So when you havent blogged for a week because you havent had time, where do you start???

This may be a little disjointed, may not make much sense, but the primary reason for my blog is a place for me to offload. so Please bear with me...it may be long!



Bank holiday Monday we had planned to visit the Garden Centre in March. Jonathan's College ws still open so we first set off there to take him. Whilst there we wanted to talk to his One to One to ensure it was OK for us to collect him a little earlier the following day as we were heading up towards Sheffield for Eve to be seen at the Children's Hospital. Whilst talking to C there was a XCrash...instinctively we knew it was Jonathan, David was first out the door and jonathan was laid out on his back!
This was the longest Episode he has had, he was unresponsive for around 3 mintues and then incoherent/confused for a further 5 before gradually coming to and recognisiing people, it was probably 10 minutes or maybe slightly more before he was able to sit on a chair and appear back to himself. An Ambulance was called and the firrst responder arrived shortly after Jonathan was sat up. He took Vital Signs and wrote the episode up o his sheet, then advised us to get Jonathan seen. He offered to call a back up ambulance but was happy for us to take Jonathan ourselves.
Our day at March ended up a Day at Pilgrim. First in the emergency department then on the Clinical Decisions unit. They were very throrough, much more he;pful than the last time we had been taken him to A & E, so we were very pleased with the attitude this time.
The Doctor was able to acces the report on his CT scan, apparantly there is evidence of Ischaemic damage, they want him to have an urgent MRI, there was confusion over whether this is possible because of all the metal work in his legs and sternum, However when we returned from Sheffield on Saturday an appointment had come in the post and after several phonecalls it has been established that he is safe to have an MRI!
We were eventually discharged late afternoon and returned home to make plans for our trip to Sheffield.
Earlier in the Month we had made arrangements to visit friends in Guiseley, However as Eve has been so poorly and really isnt bouncing back very well we decided that it would be sensible to have her seen in Sheffield to be certain that there was not any resuidual infection lingering. IN order to make this a safe option should she be admitted, we booked a hotel in Barnsely, just a few miles from the hospital, Planned a Carer and ensured that should I be at hosptial with Eve then the rest of them could still enjoy some time away from home. Our friends would be able to visit and the Hotel had a pool so the kids would be happy.
The Medics who were caring for Jonathan on Monday were happy that we were going where we were as there were two centres of exelence able to meet his needs in close proximity should we have a problem whislt away.
So Tuesday morning Jonathan happily went off to colege, we packed and organised and spoke with Sheffield. Very kindly the team from Sheffield Children's made arrangements to come and see Eve at the hotel. This would mean that the children could still enjoy their break without having to be dragged to the Hospital at all. In the event the team came and saw her and left us with monitoring equipmenmt to do a sleep study overnight, then came back and collected the machinery and a sample of sputum the next morning. Our friends visited the children swam, the children played outside teh children had a great time together. The Adults did as little as possible and chilled and tried hard to relax...Eve choked and spluttered and I worked my way through half a box of Suction Catheters.
Rosie barely slept the whole time we were away. Wandering when she could till gone 11 at night and waking again before 4...She was very pleased when we got home to climb into her secure bed and have the door close. she slept for 3 hours as soon as we got in!

After the machinery was colected on thursday we headed up to Nelson, This is where we lived when we had Luke, is grave is there and we bought flowers and went to the Grave, the Children were pleased to go and see where their brother was buried, spend time talking about him and leaving him some flowers. We had friends whose baby daughter is buried in the same cemetry and we took one of lukes flowers and laid it in Bethany's grave too.
We also went into the town, I was desperate to visit a market stal holder who we knew really well, their son had a complex Liver and bowel problem from birth and at 2 years old had had a Liver and Bowel transplant. The Stall was not where it had been, and I had resigned myselgf to not seeing them when I suddenly spotted a small shop on a different streeet with their Name above it! Going in there was a gentleman I didnt recognise at the counter. I explained who I was and that I was hoping to see the previous owners...he told me their son was upstairs....Going up a young man welcomed me and asked what I was looking for, I explained I had knwon the family who had the market stall and the baby who had had the Liver and Bowel Transplant...he said...that was me!
I was so thrilled to see him, looking well, working and he told me he was at college..still had frequent check ups of course but was essentialy very well!
That encounter really made my day! I was saddned that his parents were not there but I made sure he had my name and could tell them I had been in.

The rest of the day was spent visiting old hants...in between suctioning Eve and chasing Rosie.
Friday we had planned to meet up with our friends again at Manchester Lego Discovery Centre.
We arrived a few minutes before them but by the time we had sorted the tickets we were al together. The place seemed very noisy and I was worried about Jonathan, he seemed OK and after the initial entrance through the factory tour...somewhat lame and frustratingly long winded for Rosie, we entered the Queue for what turned out to be the only ride. The kids and two adults went off to ride, David and I stayed with Eve and waited. Whilst chatting with the guy on the Photo Booth a young Mum with a baby in her arms came to ask where the toilets were, having her directions she went back to fetch her young Daughter , Stepping over the chain barrier as the direct route back to her child, she caught her foot and fell. Twisting to protect her baby she managed to twist her feet around the chain and fell full length. It was obvious her ankle was broken or dislocated...probably both. I was first to her side and laid along side her supporting her head whilst a couple of other ladies, who were with also came along. Averting all attempts at moving her or giving her water to drink, I ensured Ambulance was called and the public diverted away from the area, it took a while for this to happen and one of the other Mums was blocking the gangway to stop people trying to stpe over her.. It took an age for help to come, the First response unit from the Trafford Centre arrived eventually but were unable to offer her any pain relief or even Oxygen, Eventually the ambulance sirens were heard and I was able to leave...I have since ehard from her husband she has had surgery and is doing OK.
We moved on through the centre and were thoroughly disappointed. It was not long before we decided to leave. We walked through the Trafford Centre a little way, found a place for Dinner and then Our friends took a Taxi back to the station. Sadly L was not at all well and really needed to get home...although she didnt make it home but ended up in hospital as soon as she reached Leeds.
Pray for these two ladies, K and L...both a long way to go for recovery I think.

So we headed off towards home ourselves, unfortunately the traffic was abomniable and we ended up staying a night in what must have been the nosiest hotel in England!
Boy am I glad to be home!