Reece goes away for Christmas. Again.

[The_nun]

Not too sure why but we are having a vomit night tonight, maybe it is the peadiasure that we have introduced into his diet yesterday, lets hope that is all it is. Looking slightly dark and sunken around the eyes which is a sign of dehydration but not too bad and has picked up in the last 30 mins or so, so fingers crossed.

[The_nun]

Well Reece has been free of TPN for 10 whole nights now. He is still here with us although tonight he wanted to go sleep at his mam's so off he has gone to return tomorrow. His eating has been pretty good up until yesterday when he started to lose his appetite again. He really has to eat or this will just not work. His poo's are still very watery but he is only having around 3 / 4 a day. We are working on his meds, juggling them around, dropping some in hope to hit that fine balance, drawing off excess air from his tummy, giving him dioralyte and some paediasure drinks. It can all get very tense and frustrating at times, you have to really be on the ball all the time. I am pretty bolloxed at the moment as working shifts and not getting much sleep but it will all be worth it if this works. I have this afternoon to myself which as much as I feel guilty saying it, I need it to recharge, although I have so much to catch up on and I want to chill etc, can't do a lot as back in work at at 6am, which ain't a bad start compared to some. His weight today was 14.2, not great but not that bad either. If only his appetite had kept up, maybe a night at his mom's and he will come back ready to try again. At the moment he is getting a little sick of his life being centered around food, we have to change our tactics now he is going off it again and think up new ideas.

[phatomch]

sounds like good news, not selfish needing to re-charge at all.

whats the longest he's been off tpn? is 10 days a good run I don't want to bok it but it seems a good start.

keep fighting kid

[tikay]

Have a good rest today Maureen, & send my love tro Reece, please.

[The_nun]

Wasn't a great rest tbh, quite a few calls from Stacey as Reece was not feeling too well and wanted us, he slept for 17 hours, came back to us on Friday as soon as I had finished work and is still here now. It is a little tiring at the mo as I am on a long stint at work where I don't get another rest day till Thursday, incl a 10 1/2 hour shift tomorrow, but go onto lates on Monday so it will be easier for Daz n me to take it in turns to be here. There is definatley a massive change in his energy levels, he has gone back to wanting to be carried more and not coping with the stairs, this time 3 weeks or so back he almost ran up them and walked for ages. Food wise, not too good, his appetite has dropped again, his blood results, which took some getting out od his tiny veins showed to be not bad to say he has been off TPN for so long. His potassium and sodium levels are at the lowest end of the margin, so we need to improve them. The plan is to keep giving the dioralyte twice a day but increase the  paediasure drinks up to 4 max in 24 hours so what we are doing is setting the alarm clock in the night and putting one through his gastrostomy whilst he is asleep he can not mange to drink them all. He is suffering with bloatedness (if that's a word) and wind in the latter part of the day, this is due to him eating more than he has ever eaten before, but this is reducing slightly now he is losing his appetite. To try and help this I try and draw back on his gastrostomy occasionally in hope it will get rid of some wind but can not see it working as yet. Anyway not weighed him again yet but will do tonight, Antonino reckons the first 5 days were the biggest worry but I don't quite agree on that one, I just do not want him slowly getting thinner like last time but I also do not want another line in risking infections etc, but have you all noticed how that since we have been with Antonino his line infections reduced greatly?. this has two contributing factors, 1, he is home a lot more so this reduces the ammount of people accessing his line and clinical errors. 2. He insists on putting a quite strong antibiotic down his line once a day along with another solution called Urokinase, look it up on wiki eww.

I know it may sound silly to most of you..well how many people die of this flu that cancer etc etc a day thinkers but I am truly worried shitless that he will catch this bloody Swine flu and not be strong enough to fight it off. He gets bored in the house all the time so when we take him out it is to places like woods, or large areas that are not busy, he missed his leaving party at Nursery on Friday because of me worrying but Antonino says I am doing right and a few of the parents with poorly kids are doing similar. He has fought so hard to get this far when is the lad going to get a break.

Phatomch, there was an attempt to ween him off TPN post his major op to lengthen his small bowel he did not do too well for one reason or another so returned back on it Dec 10th 08 to Feb 6th 09, but that was a lot of time oin hossy as he was quite poorly and very thin indeed. This is the first time we have had him home without a line in and only the second time without TPN. Last time his weight was dropping pretty quick, this time the nutrient drinks have been introduced in hope he can absorb them and they will replace some of the meals which he trys but fails to eat. If the bloating happens too much I just can not get them in him incase he vomits. So it is a first all round really.

Not too sure if I already said but his promised treat is that on the next hot day, which are few n far 'tween in Yorkshire, we are buying him a big paddling pool as this will be the first time in his life that he will be able to get completely wet. Also his Walking with Dinosaur tickets arrived today, he has got good premier seats fro both himself and his Grandad for next Thursday at Sheffield and he is so very excited. Thanks to Blonde members.

xxxx

[The_nun]

One last thing, if he remains free of TPN we will deffy be looking at the latter part of this year for his holiday so fingers crossed all please.

[tikay]

One last thing, if he remains free of TPN we will deffy be looking at the latter part of this year for his holiday so fingers crossed all please.

And so say all of us.

Is there enough money in the Holiday Kitty yet?

[The_nun]

We are getting there. x

[RED-DOG]

Bloody hell Maureen. What a rollercoaster. He's so lucky to have you and Darren in his corner.

[The_nun]

Been very bloated all day, vomited twice, OK in himself just this awful tummy, gone to A & E in Manchester looks like he has some sort of infection in his gut as his gastrostomy is sore too, I couldn't go as on a long shift at work as was in between stations when I organised him to go in. Hopefully be OK by Thursday to see his much awaited Dinosaur exhibition. he really can not miss that he has waited so long to see it.

[The_nun]

He is staying in hossy, suspected blockage of the bowel, which I suppose with all the op's he has had on it it stands to reason. Can not be a total blockage as he is still pooing.

[The_nun]

His weight today. 13.4 kilos

[vinni]

my god mo ,my thoughts are with you and daz ,what a brave little kid .

hope he enjoys it on thursday .

[cia260895]

Click to see full-size image.

hope all is well,

he'll soon be up and about again

again your doing a superb job 

[Claw75]

Sorry to hear of all the ups and downs lately Mo.  Thinking of Reece and you all as always.

Re the worries about the swine flu, I think you're 100% right to keep Reece as protected as you can, I know I would.

Take care xx