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

Thursday 18 June 2009

D + 42 and home!

Oh my goodness, I can't believe I haven't updated with our important news - we are home!

Oliver continues to have tummy problems and has not eaten anything for the 2nd day because he has not been to the toilet again since Sunday. We are keeping everything crossed that its like the doctors at GOSH said his gut needs time t0 get better from the chemo.

We continue to strive to get his 1300 ml of fluids in him and the gravity feeding tubes are a god send or we would never do it.

We have found another family whos son is affected by WAS a few miles away in Newark and we hope that we can share this journey with them too.

I will continue to update with Olivers progress. The community nurse has been in today to take his blood for cyclosporin levels and a FBC so hoping that his platelets come up or stayed the same.

Just found out that although the local hospital has agreed to do his immunoglobulin there, none of the nurses are trained in central lines so this will have to be addressed. However Sheffield Childrens hospital have agreed to take some of his care on so we will probably be able to have it done there.

Anyway, signing off for now - thanks for your supportxx

Friday 12 June 2009

D +36

We are now on Day 36 and Im pleased to say at last Oliver has had a pooh and we are looking to going home once he can come off IV fluids!!!!!!!!! We have to have a last MOT re viruses and bacterial infections before we can go and of course step up his fluids as he cannot go home on IV fluids.

Its extremely hard to get a 3 year old to drink 1300 ml of fluids a day!

He has eaten a little more today and is no longer disgusted at the thought of food - bless him he must have been so bunged up.

His platelets today are 90K which is fantastic news - this is hopefully going towards a 'normal' count which would make all our dreams come true.

The photo was taken today with him looking a lot happier than he has in days, which in turn makes us happy.
We still have a long way to go when we do eventually go home but its another huge step in the final 'cure' for Olivers Wiskott Aldrich Syndrome.
I will never forget how hard this has been on all of us but in turn I will never forget what GOSH and Olivers donor have done for us, its nothing short of a miracle.

Monday 8 June 2009

D +33

My I have been slack again at updating.

The good news is that Olivers counts continue to rise and yesterday his platelet count was 79K and today 69K -which is around the same (the margin for miscounting is around 10) - this means that he has started making platelets for the first time in his life which is amazing. It is not a normal count (normal is 140K to 300K) but a safe range and you can even have an op at 50K. His white blood cell counts also continue to rise which will help to protect him from infection. We were also elated to learn that Oliver has got 100% engraftment of donor cells so hopefully now the marrow will keep growing and working.

Not so good is that Oliver is still not eating properly and his really constipated. He is also losing weight so we will not be allowed to go home until he has a pooh and starts eating. Easier said than done with a stubborn, scared 3 year old. Bless him we are expecting such a lot of him when his little body has been through so much.

The staff here are great but it now feels like living in a fish bowl and sometimes you just want to scream leave me alone!!!!!

Our continuing thanks for all the support and messages of support we are getting and also your cards and presents. We feel very lucky to have such wonderful friends and family

Monday 1 June 2009

D +25

Again ive been a bit slack at updating this blog - just been another rollercoaster of a week. Oliver has continued with the stomach cramps, so much so he went to hardly eating anything, so then we were worried he would have to go on TPN (Total parental nutrition) through his line, but after another dose of laxative, and another explosion, he has started eating again.

His white blood cell counts have fluctuated since my last update, and his full WCC count today is 0.96 and his neutraphils 0.45. The good news is that his HB (haemoglobin) has gone up and his platelets have held (44K, 45K, 46K) for three days!! We are holding onto our hats that this may be the start of an improvement but at this stage that can really fluctuate so will wait to see what tomorrow brings.

They should be testing him for engratfment this week so everything crossed.

The photo was taken on a good day