Saturday, 18 August 2012

Medically Right Now

Our hospital visits are still frequent with all different departments involved.  Every Monday we go in to have Allegra's nasal gastric tube re-taped and her central lines flushed, cleaned and re-dressed.  It is something that Allegra does not like at all.  What she does enjoy about going to hospital is her chino from Sandrock, seeing a little friend (Joshie and Allegra pictured), getting dressed up and generally being social to the familiar medical faces.  We are now seeing our Oncologist or Doctor fortnightly now.  This is progress.

Allegra's blood counts are slowly but surely coming up and unfortunately her liver function is still rising fast.  The ALT marker is now at 668.  Last fortnight it was 542, it should be between 12-41.  So you can understand my concern and worry when you see these figures.  And it is worse because they have no idea as to why.  And we have been down this track before, the unknown.  I have cut out Paracetamol and Omeprazole (prevent ulcers) and am now reducing her Clonidine (anti-anxiety).  Allegra has been on these medicines since January and I am hoping that cutting them out her liver will recover.
In the meantime, our lovely Dr Molly has arranged an appointment to see a Gastroenterologist.  I am looking forward in seeing ALL of Allegra's numbers where they should be in the normal range.  We don't want to see any more asterix.

Haemoglobin is now 106, a fortnight ago it was 99, s/be 110-140
Platelets is now 185, a fortnight ago it was 109, s/be 150-400
White Cells is now 5.4, a fortnight ago it was 5.4, s/be 6-17
Neutrophils is now 2.61, a fortnight ago it was 2.86, s/be 1.5-8.5

These are great results, we just have to sort out this damn liver.

Allegra's central line (Hickman Line) is still in.  As far as her blood count is concerned the line could be removed but I really want the liver sorted, just in case they need access.  Allegra is quite attached to her lines as they have been with her since January.

My little Allegra is still not eating enough calories, so her Nasal Gastric Tube is in and still on continuos feeds.  I am very keen to get rid of these feeds but what I have read and also been informed the eating process can take up to 12 months to recover.  I just have to relax and chill out about eating.  It's so sad as Allegra was a fantastic eater, big meals, regular meals and all good food pre-illness.  We went into hospital with Allegra weighing 10kilos, we were discharged at 9kilos and my little Allegra weighs in now at 9.7kilos.

We have also been in to see Mr Leo Donnan at the Limb Reconstruction Clinic at RCH.  Allegra had x-rays on both legs upper and lower including her pelvis.
He reported to us that he was happy, her left femur was correctly positioned in the hip joint, there is bone growth from the Bisphosphanate infusions, the bone is correcting (straightening) and there is a significant bone length difference between left and right.  IF the length difference is a problem way way way down the track there are many ways it can be corrected.  So all in all great news, Leo said "quite boring results really", we love boring.  We will not be having  x-rays or see him for another 6 months.

Clever girl my girl is.

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