Wednesday 29 July 2009

D +82

We are now on Day 82 unbelievably - since transplant. Oliver has been in and out of Sheffield Childrens hospital and is now under the care of the GI doctor there to try to iron out his tummy problems.

His hair has started growing back but he still has his NG tube in situ as he is still on a number of drugs and overnight feeds to meet his fluid target.

He has had a couple of unexplained rashes, and I suppose post transplant you think the worst each time.

He has tested positive once to Adenovirus in his pooh which is quite nasty but so far its not in his blood or this throat so Sheffield continue to keep an eye on this also.

We wonder when the fear will leave us, as his platelet count is now normal, we are no longer worrying about bruises but infection so one worry has turned into another. It does come with the territory of transplant but nevertheless is still very hard.

Baby is due in three weeks and I am really looking forward to his arrival - not least cos i feel like a useless lump and the moment!

Thanks for all your messages of support and your continuous concern and love - it means to world to us all.

Monday 13 July 2009

D +66

Well, we got discharged from Sheffield, had a reasonable week with Oliver responding well to his overnight feeds and becoming more like his old self, we are back in hospital today!

He has had a temp and some swelling round the exit site of his hickman line so they have taken blood cultures and swabs from the site to check for a line infection. This means that he will have to go on IV antibiotics until we know its not an infection or for longer if it turns out it is.

His blood results remain good, although his haemoglobin is still lower than its should be, everything else is fine. We also had it confirmed by GOSH at his last visit he was still 100% donor engrafted.

I remain hopeful that we will all be home when I go into labour with our new baby.

Will keep you posted, must sign off now as am a tired 34 week pregnant woman on a mission to go to bed! Dave is with Oliver tonight bless him hes a fab Dad.

Friday 3 July 2009

D +56

We have been given the 'weekend off' from Sheffield Childrens hospital. Oliver has made good progress and is asking for food and is allowed a light diet. We have yet to see if he will have a pooh on his own without the need for laxatives. He has had a bit of tummy pain but that seemed to co-incide with starting him on a higher calorie milk, so we have changed it back to the original.

He is on an overnight milk feed now which we can do at home with the help of a pump which will give him both fluid and calorie intake and will help us all enormously.

We went to GOSH on Wednesday 1st July and apart from the sweltering heat and the 7 hours in total in an ambulance it went well. His consultant wants to start weaning him off the ciclosporin which we will do over the next 6 weeks, magnesium supplement and amilodopine (for high blood pressure, caused by the ciclosporin!) will follow. He has also been taken off Itraconazole. All being well GOSH don't want to see us again for another 2 months and are happy for Sheffield to Manage Oliver which is great news.

Olivers platelet count was at last FBC 252K which is fantastic. His hb is still low and lymphocytes still low but all other counts within normal range.

We return to Sheffield Childrens hospital on Monday for his immunoglobulin and for further assessment. If the weekend goes well we can be discharged and continue with the milk feeds etc until such a time he does not need them.

We are really happy with the care at Sheffield and will be grateful to them for the progress Oliver has made.

Will keep updating as events happen