Had a rough couple of days, although we know its going to get MUCH worse. Oliver finished his chemo yesterday but was really sick. Vomiting all the fluid up we are so carefully monitoring. Then he slipped and banged his head in the afternoon. He had a massive tantrum as he is fed up of being 'hooked up' to machines, so at least he has still got some feistyness in him. I had to walk out the room as he clearly blames us for some of it,and I was so upset I didn't want him to see. The nurses were brilliant though and assured me that its nothing they haven't seen before. Last night he had a nosebleed about 1am so was changing sheets etc. Bless him he didn't even wake up. He is also still having night feeds to top his calories and his fluids up.
He asked to go home also yesterday for the first time which is very upsetting. Theres one little girl in particular he is missing -Gigi you know who you are!
The good news is they are keeping an eye on his platelets so will probably give him a top up today.
He starts on Aciclovir and Cyclosporin today, which are antiviral and anti rejection drugs, again he has to have this IV so hes not best pleased. Also got to change the dressing on his Hickman line and on his NG tube today so thats something we are all looking forward to... not!
Despite all this I do think he is tolerating it well for a child of his age. The toys we have bought him and gifts we have received are keeping him occupied though so I need to do a lot of thank yous as they have been lifesavers- Got to try to find a 'take along Thomas' now as hes been going on about it and I don't mind spoiling him at the moment. We have also received some beautiful cards and messages wishing us well. Its at times like this you realise who your true and genuine friends are.
Its transplant day tomorrow and we are looking at it as the first day of the rest of his life - a big day for sure.
Then we just hope and pray that the bone marrow his donor has so selflessly donated engrafts and we can look towards going home.
Going to try to get some sleep now.
skip to main |
skip to sidebar
This Blog is to share the journey of our Son Oliver living with Wiskott Aldrich Syndrome and his subsequent Treatment and Bone Marrow Transplant
Oliver at 5 months
5 comments:
Hi Deb,
It's Bee here...I have spoken with you on the IDF (WAS) forum. I have a 23 month old boy with WAS, and we are heading towards BMT aswell. There are SO SO SO many similarities between your situation and ours. I would love to chat with you more about this - perhaps at a later time. Just wanting to wish you all the VERY best for the 'big' day tomorrow.As you say, may this be the first day of the rest of a healthy and happy life.
Hi to Oliver, Deb & Dave - a little rough patch then, not too unexpected but not too bad either. He's doing extremely well for his age and probably has a greater tollerance than most men I know!!You have all come so far and you are rapidly moving to the next chapter in Olivers Journey. Will be thinking of you all tomorrow and hoping for the best possible outcome of the transplant. Hugs & Kisses to Ollie and love to both of you too. Sue & Geoff xx
Bee - I would love to chat with you also, perhaps we can swap personal email addresses. Whats your little boys name?
Sue and Geoff. Thanks for the update, I can count on you sue to be on the ball!
Sooo nervous about tomorrow.
Will keep you updated.
Email swap sounds great!
Mine is : beeholzer@hotmail.com
Thinking of you all today and look forward to hearing continual great news!
Bee and Max
Just thinking of you all tonight and hoping everything has gone well today for Oliver and the recovery phase has now begun. Your'e probably exhausted from all the build up and now we watch and wait for confirmation that the grafting process has been successful. In our thoughts always and big kisses and hugs, when you can, for Ollie.
Auntie Sue and Uncle Geoff xxxxxxx
Post a Comment