Olivers Hickman line was successfully removed on Wednesday last week, he was a bit hysterical when he came out of the anaesthetic as he had a canula in the back of his hand,but he soon calmed down. We have to now have his immunoglobulin via a canula which should be fun but better than the constant threat of infection with the Hickman line.
He continues to be well and he is full of energy but his behaviour is taking a downward turn he is just so fed up of being cooped up in the house. GOSH have said he can go swimming at quiet times which is another huge step forward. They have also said he should be able to start nursery in January which is great news for us all particularly Oliver. We have got an inclusion support worker who will liaise with the school to ensure they give him his medication and inform us of any illnesses in school, in particular, Chickenpox as this is still quite serious for Oliver whilst his immune system is reconstituting.
Our next appointment at GOSH is on the 27th January and we are hoping at that point we can go to 6 monthly appointments, but I suspect it will stay at 3 monthly for a while. We will always be in the debt of GOSH who have played a very important part in saving Olivers life. We intend to apply to the Anthony Nolan Trust after 2 years to meet Olivers donor, this is of course his decision. What do you say to the person who has saved your sons life? Thank you seems so inadequate. He will be 23 years old by then and Oliver will be 5 1/2. Mind blowing.
Will continue to update when possible - very busy at moment with a caged 4 year old and a 2 month old - who continues to be a joy.
Bye for now
Saturday, 7 November 2009
Sunday, 25 October 2009
D +170
The days are flying by and Oliver (by the grace of god) continues to do well. He is eating and drinking normally (apart from the usual behaviour issues with eating!) and he is having his Hickman line removed on Wednesday! This is great news as its another step torwards normality - whatever that is - and a big reduction in the likelihood of an infection, in the line anyway. His counts are within the normal range but Lympocytes and neutraphils still a bit low. His White blood cell count was really low too and I went into a panic about graft failure but Great Ormond Street assure us everything is fine.
Adam is doing great although he is a very lazy eater so he wants to feed again within a couple of hours. After having an ill child though he really is a blessing so I accept these little idiosyncrasies and its part of the joy of having another child when we really thought we would not have any more.
We are hoping that Oliver will be able to start nursery in January, it all depends on his counts though. He really is like a caged lion now and is desparate to mix with his peers so we are keeping everything crossed. He still has restrictions on how many people he can be with and what he can eat etc, so we have a way to go yet.
Our friend - Shaun Milburn is running a half marathon today in aid of the Anthony Nolan Trust and has cited Oliver as his inspiration for doing so, we are so grateful and without our friends and family we would not have got through the last year. Please visit his site at justgiving.com/shaunmilburn-run4oliver and please urge everyone you know to register with the Anthony Nolan Trust, a young man I know of has passed away this week as he never found a match. Lets work together to make this a thing of the past.
Will update again with more news - thanks, thanks and thanks again...xx
Adam is doing great although he is a very lazy eater so he wants to feed again within a couple of hours. After having an ill child though he really is a blessing so I accept these little idiosyncrasies and its part of the joy of having another child when we really thought we would not have any more.
We are hoping that Oliver will be able to start nursery in January, it all depends on his counts though. He really is like a caged lion now and is desparate to mix with his peers so we are keeping everything crossed. He still has restrictions on how many people he can be with and what he can eat etc, so we have a way to go yet.
Our friend - Shaun Milburn is running a half marathon today in aid of the Anthony Nolan Trust and has cited Oliver as his inspiration for doing so, we are so grateful and without our friends and family we would not have got through the last year. Please visit his site at justgiving.com/shaunmilburn-run4oliver and please urge everyone you know to register with the Anthony Nolan Trust, a young man I know of has passed away this week as he never found a match. Lets work together to make this a thing of the past.
Will update again with more news - thanks, thanks and thanks again...xx
Friday, 25 September 2009
D +140
Oliver has now got his NG tube out!! Accident rather than design, he drank too much juice and wretched it out. So we decided to trial it being out. He is taking his medication by mouth, he is eating and drinking normally now, going to the loo for a pooh about 4 times a day and we are hoping he has turned a corner. GOSH have also said he can have his hickman line out, but our local hospital are hesitating Im on the verge of saying just take the bloody thing out!!!!! He is only having bloods done now every three weeks and I don't see the point in him having his dressing changed and the line flushed every week for nothing, just waiting for him to get an infection in it.
We saw a surgeon at Sheffield yesterday and he does not think Oliver has hirschsprungs disease and he is not going to perform a biopsy at this time. Oliver will have a follow up appointment with the G.I doctor in October.
This is great news are we really are keeping everything crossed that he has turned a corner. Bless him he deserves it. Please join us in hoping and praying that this is the case.
We saw a surgeon at Sheffield yesterday and he does not think Oliver has hirschsprungs disease and he is not going to perform a biopsy at this time. Oliver will have a follow up appointment with the G.I doctor in October.
This is great news are we really are keeping everything crossed that he has turned a corner. Bless him he deserves it. Please join us in hoping and praying that this is the case.
Saturday, 19 September 2009
D +134
Now on D +134 and time is passing so fast. Olivers blood results remain stable and he is still 100% donor engrafted which is excellent news. His tummy problems have continued however and he had an MRI scan at Sheffield Childrens hospital to see if that uncovered anything. All it showed is that his colon is quite 'baggy' which can be a sign of another congential problem - hurschprungs disease. This however usually presents in infanthood so we are talking about having a biopsy done to be sure - however GOSH do not want this yet because he is still so early out of transplant. If it is that it will mean a surgical procedure to put it right so looks like we might not have dodged hospitals quite yet.
He is starting to show signs of going to the toilet without laxatives though so I suppose only time will tell. There is definately a physcological barrier there too as he said he does not want to do a pooh as it hurts his tummy.
He is now off cyclosporin, metoclopromide and itraconazole oh, and magnesium so we are slowly getting to a point (if he continues to eat properly) that his NG tube can come out. GOSH have also said that he can now go to three weekly blood tests and that in theory his hickman line can come out. Thats a huge step forward and a big infection risk gone so Im chasing Sheffield now as they should be able to do the procedure to remove the hickman line.
Other news is that we have had our baby! Adam Stanley Wootton was born on 2nd September 2009, at 18.23 by C-section weighing 9 pounds 14 ozs! So Im now in isolation too (well i can't drive for 6 weeks) Im beginning to know how Oliver feels. He is absolutely adorable but its hard juggling a newborn and a toddler especially a toddler who is like a caged lion at the moment.
Must go as Adam is calling for food he is such a milk monster - thanks for your continued interest and support. I hope you join us is hoping and praying that Olivers tummy problems pass on their own and he continues to keep that precious engraftement.
love to you all
He is starting to show signs of going to the toilet without laxatives though so I suppose only time will tell. There is definately a physcological barrier there too as he said he does not want to do a pooh as it hurts his tummy.
He is now off cyclosporin, metoclopromide and itraconazole oh, and magnesium so we are slowly getting to a point (if he continues to eat properly) that his NG tube can come out. GOSH have also said that he can now go to three weekly blood tests and that in theory his hickman line can come out. Thats a huge step forward and a big infection risk gone so Im chasing Sheffield now as they should be able to do the procedure to remove the hickman line.
Other news is that we have had our baby! Adam Stanley Wootton was born on 2nd September 2009, at 18.23 by C-section weighing 9 pounds 14 ozs! So Im now in isolation too (well i can't drive for 6 weeks) Im beginning to know how Oliver feels. He is absolutely adorable but its hard juggling a newborn and a toddler especially a toddler who is like a caged lion at the moment.
Must go as Adam is calling for food he is such a milk monster - thanks for your continued interest and support. I hope you join us is hoping and praying that Olivers tummy problems pass on their own and he continues to keep that precious engraftement.
love to you all
Sunday, 16 August 2009
D +100
We are now on D +100 since transplant, it only seems like yesterday when we were leaving GOSH! Olivers blood results continue to be good particularly his platelet count which is something we always concentrate on. His Haemoglobin is still slightly low but better than it has been so hopefully that will improve with time.
He continues to have tummy problems but we appear (touch wood) to now be keeping on top of it with giving him regular laxatives to get his bowel to work properly and hes been quite well this week although he still is not eating much and we cannot for the life of us meet 1300ml of fluid a day so he is still on the overnight milk feeds through his NG tube which has taken the pressure off to a certain extent.
We are (well, Dave is - given that Im due to give birth any time) at GOSH next week and have many, many questions to ask - some of which involve taking him off some medication and we can then at least hope for the NG tube to come out when he starts eating a bit more. Also we are not sure about the fluid target and what drugs that depends on so need a few answers on Wednesday.
He will also have another engraftment study done and we hope he remains 100% donor- which all his results indicate his is but its nice to have it confirmed.
His hair has started to grow back although its still very much like peach fluff and he remains very hairy elsewhere -which is down to the cyclosporin. Now he has been weaned off this, the hair should slowly recede unless he has problems with GVHD and not sure if he will then go back on cyclosporin or on steriods.
Oliver has also had a wish granted from the 'make a wish' foundation which we are trying to organise - he will get a full wish day involving a trip out in a limo or something similar and a new toy for the garden in his case a climbing set - something we have not been able to let him have up until now because of his platelet count. This should be a wonderful day and hopefully re-affirm the start of new lives for all of us - most importantly Oliver.
Will sign off for now - will keep updating when relevant -much love to you all.
He continues to have tummy problems but we appear (touch wood) to now be keeping on top of it with giving him regular laxatives to get his bowel to work properly and hes been quite well this week although he still is not eating much and we cannot for the life of us meet 1300ml of fluid a day so he is still on the overnight milk feeds through his NG tube which has taken the pressure off to a certain extent.
We are (well, Dave is - given that Im due to give birth any time) at GOSH next week and have many, many questions to ask - some of which involve taking him off some medication and we can then at least hope for the NG tube to come out when he starts eating a bit more. Also we are not sure about the fluid target and what drugs that depends on so need a few answers on Wednesday.
He will also have another engraftment study done and we hope he remains 100% donor- which all his results indicate his is but its nice to have it confirmed.
His hair has started to grow back although its still very much like peach fluff and he remains very hairy elsewhere -which is down to the cyclosporin. Now he has been weaned off this, the hair should slowly recede unless he has problems with GVHD and not sure if he will then go back on cyclosporin or on steriods.
Oliver has also had a wish granted from the 'make a wish' foundation which we are trying to organise - he will get a full wish day involving a trip out in a limo or something similar and a new toy for the garden in his case a climbing set - something we have not been able to let him have up until now because of his platelet count. This should be a wonderful day and hopefully re-affirm the start of new lives for all of us - most importantly Oliver.
Will sign off for now - will keep updating when relevant -much love to you all.
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.
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.
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.
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