Yesterday Chiara got her Immunoglobulin and coped well with this as usual with no effects. She had a rather large vomit last night but unfortunately this was "mouthwash" induced and I wont be repeating that experience again.
Today she ate very well again all day. She received her weekly treatment of ERT which she will continue to receive until we are certain she has fully engrafted.
The good good good news is today her blood level of Neutrafils were 0.7, so we are on the up. Please please don't start coming down.............if they keep rising then before long we can have visitors again. As much as Chiara loves me I am sure sometimes she looks and thinks how long have we been locked up together. She looks longingly at the double doors as if to think "I wonder what is beyond there". ......one day Chiara you will find out.
Her skin is marking very easily at the moment but I am guessing this is because her platelets are still sitting too low. She will probably require another platelet transfusion but hopefully after that she will start holding her platelet count.
She no longer gets her anti-sickness infusion but still receives 6 oral medicines at night, slowly but surely these are reducing.
Over the next few days she will be assessed by respiratory who will make the decision if they feel she is well enough to have a sleep study carried out in view of her requirements of the BIPAP at night.
I know it is a huge hope but if Chiara could leave here having had a transplant with minimal complications and no longer needing her ventilator at night I would be absolutely on cloud 9.
Having said this Chiara is so used to being put to sleep with her ventilator that she jumps around the cot with no intention of sleeping and then the minute I put her mask on she just rolls over onto her side and goes straight to sleep. Without the mask she doesn't seem to associate night time with sleep, I think it will be a case of giving the ventilator back but keeping the headgear and mask so she can have that to put her to sleep at night.................or a more drastic action of a balaclava so she knows its bedtime.
This weekend I look forward to spending time with the boys and maybe have them stay overnight with me. I miss them so much and last night Lindsay was upset talking to me as he misses Chiara and me so much. I cant wait for day when we all can become a family again or rather start living a normal family life. From the day and hour Chiara has been born her whole first year of life has been spent mostly in hospital. I know the boys understand why I am away and the reason why Chiara has to spend so much time in hospital but at the same time they are only children themselves and it is hard on everyone.
Having one child with a health problem doesn't just affect that child it affects a whole family and more.
Anyway, happy September weekend everyone whatever you are doing and thanks to everyone who has been following Chiara's progress and has been sending us messages through Facebook etc. Although I dont reply to them all I read every one and realise how much my wee princess has touched so many people's lives.
You will see by the pictures she is still as happy and certainly still as cheeky..
No comments:
Post a Comment