That's what I'm talking about! (Day +11)

Max was in a lot of pain last night, why does it always seem that Max has his rough nights when I’m on duty?? I had another teary moment last night – feeling so helpless having to listen to my precious little boy groaning in pain throughout the night and not being able to do a thing about it. Consequently the morphine was increased again today – I much prefer seeing a happy, but groggy Max as opposed to a silent groaning Max.

There were a number of magnificent bowel eruptions during the night – not so much of a chocolate fountain, instead due to the mucositis, it was more like the sauce on a sticky date pudding (hmmm pardon the pun there…). As a result, my fab night nurse suggested that Max wear not just one nappy – but also an adult nappy to catch any escaping splodges….it was quite a sight….Sumo Max – we had to laugh!

We have recently come to discover a wonder drug – Lignocane-Xylocaine a topical local anaesthetic used for relief of pain associated with irritated or inflamed mucous membranes of the mouth, throat, and upper gastrointestinal tract. Within a couple of minutes of being squirted into Max’s mouth – voi la! – Max is speaking!




Some other pretty awesome news today…..we learned that Max’s White Cell Count (WCC) has risen to 0.6 (and his neutrophil count – one type of White Cell – was 0.16). This means that his immune system has now restarted!  We have been told that this is likely to fluctuate for some time, go back to zero for a day or so, but slowly trend upwards and it will be a while before they reach 'normal' levels. For example, for him to be considered not severely neutropenic his neutrophil count needs to be above 0.5 for three consecutive days. Each day we will now include his blood count numbers along with the normal ranges to give you an indication of what we're aiming for.

White cell count: 0.6 (6.0-17.0)
Neutrophils:  0.17 (1.5-8.5)
Haemoglobin: 80 (110-140) *
Platelets: <10 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Thankyous

• To the many blog comments, personal emails and text messages received - we love getting them so much.

• To Aunty Jo, Uncle Andy, Poppy and Digby for the PJ’s and clothes – despite the kafuffle in getting them to the posting stage – they arrived safely and unharmed! 

• To Lyndal, Saleem and Jordan for the assortment of goodies – all super choices.

• We also had a surprise visit from Mapa this morning which made Max oh so happy!

Tim's night tonight - I'm sure it'll be a 'boring' one!
Bee x