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.
Friday, 25 September 2009
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.
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
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
Wednesday, 24 June 2009
D + 47
Well, Oliver is now in Sheffield Childrens hospital. His tummy problems continued until he was down to eating and drinking nothing and was in utter agony.
We took him in and now he is nil by mouth, has been on morphine and we are trying to get to the bottom of what is wrong. He has had two x-rays, and an ultrasound. The first x-ray showed distension in his bowel but nothing else and the 2nd one has shown some improvement. The ultrasound also shows no abnormalities.
We are therefore at a loss as to what is wrong, lots of conflicting opinions, GVHD of the gut, a bug, or that the chemo has stripped his GI tract of its lining and natural flora and has therefore become very sluggish.
He is also now on a new drug to try and help with his tummy. A good sign is that he is asking for food however he continues to wretch when he has any more than about 20ml of fluid in his tummy.
Some good news which has been rather overshadowed by all this is that his platelet count is now 223K!!! Thats well into the normal range and its what we have been wanting an praying for so long, its such a shame that this set back has clouded it. His blood count as a whole is good. HB quite low but not surprising really as he has not eaten anything in about 4 days.
The docs want him to try a little bit of food tomorrow, but if he can't tolerate it, he will have to go on TPN. This is something we ran from in GOSH but at the moment if things continue we have no alternative he needs proper nutrition from somewhere.
Please join us in hoping and praying that he will tolerate some food tomorrow and begin to get better. Hes been through so much, he deserves some respite from hospital life and just to start being a little boy again. Its so hard not to break down and cry but keep trying to be strong for Oliver and our new baby Im carrying.
Will update when I can
D
We took him in and now he is nil by mouth, has been on morphine and we are trying to get to the bottom of what is wrong. He has had two x-rays, and an ultrasound. The first x-ray showed distension in his bowel but nothing else and the 2nd one has shown some improvement. The ultrasound also shows no abnormalities.
We are therefore at a loss as to what is wrong, lots of conflicting opinions, GVHD of the gut, a bug, or that the chemo has stripped his GI tract of its lining and natural flora and has therefore become very sluggish.
He is also now on a new drug to try and help with his tummy. A good sign is that he is asking for food however he continues to wretch when he has any more than about 20ml of fluid in his tummy.
Some good news which has been rather overshadowed by all this is that his platelet count is now 223K!!! Thats well into the normal range and its what we have been wanting an praying for so long, its such a shame that this set back has clouded it. His blood count as a whole is good. HB quite low but not surprising really as he has not eaten anything in about 4 days.
The docs want him to try a little bit of food tomorrow, but if he can't tolerate it, he will have to go on TPN. This is something we ran from in GOSH but at the moment if things continue we have no alternative he needs proper nutrition from somewhere.
Please join us in hoping and praying that he will tolerate some food tomorrow and begin to get better. Hes been through so much, he deserves some respite from hospital life and just to start being a little boy again. Its so hard not to break down and cry but keep trying to be strong for Oliver and our new baby Im carrying.
Will update when I can
D
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