Went to meet Ryan in Durham yesterday and had a couple of hours with him. He had been sedated that morning and soon fell asleep. However, he woke up and whilst not smiling gave Bob and me the next best thing, a lot of eye to eye contact. He was a bit agitated but Rachel says he settled later and has been generally OK today. Not sure when I will see him again.

Awake to finish.

Asleep to start

With apologies for the delay (my phone has been playing up and I have only just managed to access my messages).
Rachel says that Ryan has been smiling again and has settled nicely into his new home. Apparently one smile was best for many months. 
New carers, community team  and consultant have all been met and appear to be very supportive.
I hope to see Ryan on Sunday when we, Bob and Becky will meet him at Durham (which is about half way and as far as I can drive without a break at present), where we hope he has saved a smile for us. 
PS. We had a new record viewing last week with 133 hits in one day!

Out shopping at Fenwicks in Newcastle. (I helped design their book department many years ago!) 

Ryan has had a good Christmas Day and has even managed to smile. He is still terribly missed by me.

Rachel said Ryan had about five hours sleep and is reasonably well today.

Apparently Ryan is reasonably well today.

Rachel tells me that Ryan has had two Ok(ish) nights followed by two similar days - some good bits and some not so good. At least he is with his Mum who understands his needs better than anyone.

A good nights sleep followed by a pretty good day with no sedation needed.  He was visited by the Mayoress of Harrogate this morning, followed by a visit to a small animal sanctuary where Ryan was quite chilled out. He had a relaxing bath when we returned to Martin House and  looked the best I have seen him for a while when I left this evening. Loads of photos for me to post when they are ready.
Tomorrow is his last at Martin House for the foreseeable future and I will miss the many wonderful carers who have looked after him over the last three and a half weeks. It will also be the last time I see him for a while and I hope I can contain my emotions when he finally leaves for Northumberland.

After I left last night Ryan needed another Trachy change and further sedation. He then slept from 1 am to 7 am. Thereafter he has been unsettled again, in spite of two further bowel movements. The only real peace he seems to get at the moment is for a short period of time after sedation.
Father Christmas landed by helicopter today but Ryan was too poorly to see him. He was a bit better later when several Leeds United players called in. I put on his Arsenal shirt and he went to meet them. Hopefully, a photo tomorrow.

A moment of peace in the Sensory Room.

Another peaceful moment post sedation.

Ryan had a very rough night and had to be sedated twice. A further sedation this afternoon was followed by another bout of  discomfort. However, he did two massive "poos" later this afternoon and was peacefully asleep when I left. Let's hope he has a good night tonight.

Rachel was with Ryan last night and tells me that he continued to be uncomfortable until he eventually went to sleep quite late. He then slept until 6 am but is starting to get agitated again. I am going in late today and will update again tonight.
LATER. I went in at about 3 pm when Ryan started to get rather agitated and after sedation he managed an hour and a halfs sleep. He was then extremely agitated until a trachy change at about 8 pm quietened him down. He was quite calm when I left at around 10 o'clock.
As you know, all of the carers at Martin House are superb but I must mention particularly how much of a joy it was to be with Joy today. She not only looked after us both but went out of her way to ensure I understood all that was happening in the way of medication etc. Thank you Joy.
Thank you too to the management who let Ryan stay the extra two and a half weeks, whilst a care plan was put in place in Northumberland. The original plan was for just 40 hours per week but he will now receive the 24/7 attention which is now essential.

FRIDAY
After quite a good night Ryan had a horrible day. He had a temperature and was very uncomfortable  At times it was difficult to hold him and his ERT had to be aborted.

After a pretty bad night Ryan has had a pretty bad day. I am just so thankful he is still in Martin House where we have plenty of carers to help when needed, plus the team of doctors led by the excellent Doctor Mike.
ERT tomorrow and blood tests to see if his defunct Potacath is infected. This could be my last time as helper for his treatment but it is a bonus, as I thought last week would be the last.

At last, a good nights sleep and until about 4 pm a good, albeit, sleepy day. He became increasingly agitated after 4 pm and remained so until I had to leave at 5.30. 

A rare good moment with "Princess" Fiona yesterday.

If you read yesterdays blog, the same applies to today.

A similar pattern to yesterday. He was quite relaxed and alert when he arrived in Martin House and I had a good hours cuddle with no problems. He was just a bit unsettled when I left at 8.30. 

Rachel tells me Ryan had a rough night during his first one in Stobswood. Apparently he calmed down a bit as the day progressed. He is back to Martin House on Monday until Friday and then it's "Up North" for good.

Not a bad night but not much sleep. When I arrived Ryan was a bit agitated and became progressively more so until, in the end, it was difficult to hold him. It turned out that his trachy was quite badly blocked and after a trachy change and some Paracetamol (in case he also had tummy pains) he settled down.I can't imagine the panic a blockage causes. It is not always apparent his discomfort is caused by this and remember, Ryan can't talk so he can't tell us! This was the fourth change this week and it looks as if it could soon be at least a daily event.
He was much better when Rachel came to take him to to his new home. With no proper care package yet in place, it is going to be a 24/7 job for her. He is booked into Martin House again next week. What happens thereafter is something I would rather not contemplate.

Asleep at 1 am and then awake before 6. An emergency trachy change could have been nasty. Two attempts to put the new one in and then, thankfully, success with the third narrow emergency trachy. It must have been traumatic for both Ryan and the three people involved. Ryan had a temperature of over 38 for the second time this week and had spells of agitation mixed with being relatively quiet whilst I was with him. It is lucky he is in Martin House this week, where skilled medical attention is never more than a few minutes away. Not a good day.

Ryan has had a mixed time over the last two days in Martin House. As usual, he has been very well looked after by his carers and when he has been unwell, the doctors have looked at him promptly and done all they can to make him feel better.
My thanks to all concerned (and to master cook Robin and his team for the amazingly good food).

Tuesday
Ryan had a reasonable day in Martin House and I got a huge smile when I visited. Back tomorrow for more of the same!

Monday
My last ERT day started quite badly. It took three attempts to access a vein and the the infusion leaked into Ryan's arm. Luckily a fourth attempt was successful and treatment then proceeded without a hitch.
We then took Ryan to Martin House where he will stay until Saturday while Rachel moves into her new house in Stobswood, some 100 miles away.

I have not seen Ryan today but Rachel tells me he had a good night and a not too bad day.
ERT tomorrow will be the last I help with and will be a sad time for me. I have attended nearly all of these since they started in 2007.
In the afternoon I will be going with Rachel to book him in to Martin House Hospice, where he will stay until next Saturday when he will leave Harrogate for good. I will of course visit him every day.

A better night but not a very happy day.