Hi everyone,
Wow, it was a hot one yesterday! Andy went to the supermarket and came back ringing wet through. Another lady here with her son went to the zoo in the morning and when she arrived back on the ward I passed her,while walking round with Jack, and she looked very odd. She maneged to get to the door of her room with her son and the nurse at this stage were aware that she was walking funny. They got her into her room and apparently she had heat exhaustion! That’s put me off going anywhere for sure! Tomorrow we might go for a ride around the beautiful lake 30 minutes away – Westlake (staying in the taxi all the time). Jack loves the taxi rides because they beep all the time as they pass anyone that might look like they’ll bump. It’s actually scarey, some of the near misses. There are cars, bikes(lots),motorbikes(no helmets mostly),and rickshaws, all coming from every direction (or so it seems). I just breath in and close my eyes but Jack kicks and squeels at the beeeeeep. Andy said the taxi driver that brought him the other day actually hit a young boy outside the hospital! Andy was shouted “watch out!!!” The boy was OK when he got up apparently!
How did the second injection go? The same as last time. Jack upset as soon as he saw them coming in with a trolly, trying twice to get an IV into him, etc. Again Jack settled down to watch his favorites on the laptop at the side of the bed afterwards and after two hours he had a bit of juice and four hours sloppy food , so that I could spoon it in without him choking. I remembered to change his nappy this time too, as last time it was overloaded with fluid. (I never thought about the two bags of fluid being dripped into him having to come out!!). Then I rolled himover and he slept like a baby all night.
He wasn’t in a good mood this morning though and refused breakfast, so I gave him some calpol just in case he had a headache.
I didn’t think that he would entertain Daisey and physio at all this morning, but he went along with it until the docs came round to visit! There are about eight people come into the room and gather rather closely round, all trying to be friendly, then his doctor tries to talk to him and hold his hand- thats when Jack does his bit!! They don’t hang around long then!
Daisey had to give up on the physio then because he was NOT in the mood.
All the nurses have chinese names and English names: Wendy, Daisey, Sophie, Kitty, to name a few.
There’s one thing I don’t have to do here – The laundry! Someone comes to pick up what you’ve got twice a week and delivers itback two days later for a small charge. There is no washing machine here (otherwise I would have set that task for Andy!) By the way he says thanks to his “mates” comments on his cooking and drinking skills!!! (keep it up).
Appologies about my spelling , I can’t seem to find spell check anywhere. (That’s just in case Glenda my teacher on the computer course I just passed is reading)
Thanks for all your good wishes everyone.
Jane,Andy and Jackxx
July 19th, 2007
Hi
Thanks for your comments everyone, it’s nice to know “someone is out there” reading this!
Jacks had his usual physio session today but didn’t enjoy it as much and had definately had enough before the end. He was awake again in the night, it’s becoming a habit now I think. So he was maybe a tad tired. I’m going to bed earlier in anticipation of being up for a couple of hours with him, now. I’m getting used to the beds too, its like sleeping on a padded board, the mattresses are that hard! You can apparently get a mattress topper from the supermarket for approx
July 18th, 2007
I’m trying to post a picture – don’t know if it will worksson see!,
July 17th, 2007
Hi everyone,
I started to type this blog once already and Iv’e lost it somewhere in the system so if you see a few funny pages come up you know why!
Anyway, time is slowing down a bit now here, after the initial excitement of arriving, getting to know a few people and waiting for the first injection.
Sunday, we just went across to the hotel and chilled. We tried going for a walk but it was far too hot for us, never mind poor Jack sat in his chair sweating cobs! So back to the cool airconditioned hotel we went after about five minutes. I’m also worried that the heat may affect the stem cells in Jacks body as overheating may damage them, apparently.
Yesterday was back to normal routine of physio therapy for an hour then Electric wave therapy. A large group on new patients arrived on Sunday from Hungary, ten patients with their families, and are staying two floors below but coming up to this floor for treatment. So it’s quite busy for all the staff at the moment and apparently communication is an issue as only three members of the party speak English (and most of the Chinese seem to be able to speak it but don’t have much of a clue what your’e replying – it’s quite funny sometimes!!)
Andy found out that the nurse have a drawer full of “uptodate” DVDs that anyone can use so I can watch some on the laptop at night with headphones on. There’s a DVD and telly in our room but Jack has first dabs on it!!
You can get lots of cheap DVDs at the big store in fact if anyone is thinking about coming here don’t panic about what food to bring. I brought nearly a suitcase full of food and nappies for Jack. They have most things in this supermarket,including Pampers,wipes,bread,cerials,milk,yoghurts,etc. The only things that I can’t find are baked beans, pasta of any kind (there are pasta sauce jars though) and weetabix.
If anyone wants to know anything just leave me a message in the comments section.
I asked the docs this morning if Jack will be getting any acupuncture – apparently not because it may make his muscles tighter. That’s OK then, I didn’t fancy having to hold him down while he got stuck with pins anyway!!
It’s countdown to his next spinal injection tomorrow now. At least I know what to expect now. Some people have said that they’ve seen positive things happen even after the first injection but nothings happened to Jack yet that we can see. The little blind girl who has been totally blind from birth is now sitting looking at the telly really close up see some colours. The other children here whose parents we speak to are all American and they seem positive that good things are happening already.
I’l go now it’s lunch time – reheated Pizza for me and Andy and vegetable medley made by daddy’s own hand for Jack.
bye,
Jane
July 17th, 2007
Yesterday was Friday and the day of his first injection.We woke up quite tired at 7am for temperature taking as Jack had been awake in the night for a nearly 3 hours(the air-con had been switched off and he had woken up in a sweat).
He had a good physio session for an hour, which I tried to watch closely. He didn’t mind at all today. He normally plays up with me at home! They give you a program to follow to take back home with you of what to keep up with. They’re basically massaging and stretching him in all positions at the moment.There are children here running around with acupuncture needles stuck in them everywhere, but we have’nt been told that Jack is having it,I’ll have to ask ( or maybe not-Jack hates needles)!!!!
Then we just sat and waited for the forthcoming event – his first stem cell injection!
It was supposed to happen at 2.30pm, but was running late because the aircraft that the stem cells were coming on was half an hour late landing.Anyway, I sent Andy away before they started, he’s no good around needles or for that matter a screaming Jack. (He gets so upset and frustrated because he can’t do anything). We had a traumatic 5 minutes or so trying to get an IV line into Jack, but once they injected it with “something to calm him” he was ok. Next he was wheeled out of the room to the treatment room , which of course started him crying again because I was not allowed to follow and I just waited. It was quite quick, just about 15-20 mins and he was back.
The next six hours trying to keep him lying down were not bad either. He was quite lathargic with the drug still in him.I gave him a little to drink after 2 hours and some baby food after 4 hours. The whole idea is to not lift up your head after the spinal injections for six hours or you get the most horrendous headache! The nurse kept saying “he will sleep in a minute” -not our Jack!! He just kept watching his DVD and looking at me accusingly as I stroked his head, making me feel guilty!
Andy said “Well if he gets up in the middle of the night and gives you a slap – you’ll know its working!!” Ha ha a comedian!
I rolled him over onto his front after he’d eaten (because Jack sleeps prone) and he fell asleep immediately , bless him. No fever or vomitting occurred thank goodness, and we had a good nights sleep!!
He was up at 6.30 though this morning! I’m shattered, with staying up til 11.30 ish to speak to Matty every night on MSN too.
Jack seems fine today,so far.We just had the doctors to see on their rounds this morning and with it being Saturday theres no other treatment for him today. Jack will be getting 4 spinal injections and 2 by IV, so long as everything goes well regarding side effects. This is apparently the normal ratio unless you have a fever,then it could change.So the next one should be on Wednesday.
A few people have gone out and about today with some of the staff. We haven’t managed to get further than an excursion to the big supermarket down the road yet and have to stay here all day in to keep check on Jacks temperature.I can honestly say that I’m not that bothered about walking far in all this heat though! We are just on the outskirts of Hangzhou here and one of the guys who work here said he would take us to downtown Hangzhou in a few days where we will see all the hustle and bustle of a Chinese city.
Andy’s just been to the supermarket to get some vegetables to cook for Jack (in fact he’s down the corridor in the kitchen cooking them now) It keeps him busy- he’s the cook in our house!
We’d better go check out how he’s doing I suppose!
Bye for now,
Jane, Andy and Jack x
July 14th, 2007
Hi everyone,
Sorry it has taken so long to get this blog up and running, we had to wait for admin to sort it
Well Jack was a little star on the journey here. He hates sitting in his car seat for any longer than ten mininutes(as Mark our taxi driver to Heathrow will confirm) but he was so excited on the flight that he sat in the support chair provided by Virgin Airways for the first four hours watching kids TV over and over.He didn’t have any sound because he wouldn’t have the earphones on!! (He was his usual flirty self with the airhostess’ too)
Thank you Virgin for upgrading our seats for more leg room and seat space, which we needed while Jack was feeding and sleeping on my knee.
The flight didn’t seem as long as I dreaded in the end and after three hours sleep on the plane Jack was in a great mood for the two hour journey from Shanghai to Hangzhou!!
We spent Sunday resting as it is not a working day for the doctors here and then it was action stations Monday 7:15 onwards,much to Jacks dismay! Everyone was strange to him at this stage and all wearing white coats or tunics, coming in groups to assess him.(Jack is not good with doctors/dentists or anyone in his personal space)
The nurses here are lovely though and tried their best to calm him while he had blood taken, a physio assessment, MRI, ECG,and various doctors questions. He screamed through most of it ,but only because it was all strange and new, nothing hurt.
Tuesday, we were given a diary of actions for Jack for the week starting with 50mins of physio at 9a.m. followed by 50 mins of electric stimulation every day and his first stem cell injection on friday afternoon.
The first physio session didn’t go too well,as Jack was in a strange room again with other people so, you guessed it, he just sreamed until they said ok no more! I explained (or tried to) that Jack will get better when he knows you.
Daisy is his physio and now on day 3 of seeing her he was laughing through most of it(except the real tough stretches, when he just moaned a bit!) She is doing it in our room while he watches Cbeebies though.(Thank you aunty Marlene for all those Cbeebies DVDs you did for Jack, cant live here without them!
Jack was supposed tp have an EEG too and they kept saying for two days “when he sleeps this aternoon we will take him” It took me ages to tell them he doesnt sleep in th afternoon – just at night,they didnt seem to understand why! Anyway they cancelled it in the end.
Trying to collect samoles of his bodily waste was a trial too, as he’s not potty trained yet I sat nearly an hour waiting to catch a sample of wee and then as my back was turned the little monkey started laughing- he’d done it on the towel he was lying on!! I gave in and told them no can do.
Andy is in a hotel accross the road as this room isn’t big enough for the both of us (the beds a three quarter -only enough room for me since I’ve put this weight on!) It’s got a bath though,we’ve just got a shower here in the room, and Jack and I are bathing belles so it’s great.We took Jack swimming in the indoor pool there today too,or should I say I did , Andy dipped his toe in and shivered! Jack loved it.
I’ve just put Jack to bed and am typing in the dark now so its an excuse for any spelling mistakes! We are dreading tomorrow. His first stem cell injection and its a spinal, which I thought that they put him under general anesthetic for, but they don’t. They give him something to make him relax and take him away to do it. It should take 20-30mins, a long wait. There will be two spinal and four by IV which should take a couple of hours to go in.He will have to lie on his back for six hours after the spinal injection tomorrow, no food six hours berofr or four hours after.Sounds barbaric for a little chappie but he will be sick and get a violent headache if not.
I’ll talk more about the people here on my next post as I’ve typed all this and have to work out how to post it correctly now!
bye for now
Jane, Andy and Jack x
July 12th, 2007
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