Dressing Change

 Allegra had numerous bone marrow biopsies prior to diagnosis and has another one after each round of chemotherapy, to determine the amount of cancer cells present, the pathological appearance and the response to chemotherapy.

Tragically while Allegra was in traction flat on her back one of her bone marrow sites (PSIS) became infected with a fungal bacteria (Mucor).

This created great concern to all medical staff and of course me.  The Plastics Team soon took over from the Orthopedic Team  and Allegra was out of traction, braces and splints off and immediately was supported off this infected area.  Daily dressing changes were being performed under many pain analgesics in the room and the site was monitored closely.

This was at a  neutropenic stage of her treatment so she was and is very vulnerable to further infection.  She had and has no neutrophils (white blood cells that fight bacteria and infection).

Surgery is needed but too dangerous while her blood counts are so low.  We had to wait until her counts slightly recovered and G-CSF (granulocyte-colony stimulating factor) was given intramuscular daily until her neutrophils recovered.

Allegra went to surgery on Tuesday 7th February for a debridement and sealed with a vac dressing, the result was as best as it could be.

The vac dressing change was to be performed twice a week in surgery under GA (general anaesthetic).  This was being done on a Monday and Thursday.  I really hate it when Allegra is in surgery, away from me.  The unknown makes me very anxious, I power walk around the grounds of RCH.  I have my own track.

Allegra has to date had 18 GA's and is becoming well aware of the pre-op room.  Considering she has fasted for well up to 10 sometimes 15 hours by the time she gets to theatre, many medical staff gowned and masked and her mummy leaving her again - she is amazing.

We know that the wound is not going to even begin to heal until she has fully completed her chemotherapy. I want to hear after each change is that it is "stable",  "no further infection", "mucor not present" to date this is what I am hearing.  My clever little Allegra doing all the right things.

We have come a long way since beginning of February, Allegra now has the dressing changes in the treatment room in kookaburra (oncology ward).

My little Allegra is still stable and the dressing changes happen on a Tuesday and Friday, she fasts for 2 hours, no GA and I don't have to leave her.

Later on down the track Allegra will require a skin graft.

Starting Our Blog

Today I finally put my fingers to the iPad (which our loved family and friends bought us) while we are here in hospital.  My pen and pad are running out, and it is time for me to get technologically communicative.

Firstly I want to apologise for not answering your sms's, phone calls and emails.  We have appreciated everyone's kind thoughts, well-wishes, support and prayers. It means a lot to us knowing we have been in your thoughts.  I have not felt like talking or seeing anyone during this most traumatic time in our Iives. My focus has been completely on Allegra and her care during all of her treatments and procedures.

If you want to follow Allegra's story of where we have been and what we are up to within the walls of RCH please check back and comment if you like.

Today my little darling has excelled herself once again and was a complete trooper in a dressing change on her PSIS (Posterior Superior Iliac Spine).  She was heavily medicated on pain reliefs and Midazolam which has the similar effect of drunkenness, weird feelings for me seeing my baby in such a state but kinda cute, she had a great time on it!

Every day here is another day closer to us coming home - this is what keeps us going to the unknown date. Our routine is very out of routine.  Allegra could be up all night vomiting (like last night) or she could sleep peacefully until 11am.  This doesn't mean I can leave the room because I cannot risk her waking up when I am not there, amplifiying her sense of insecurity.  Although, while my mum (Kay) aka Mar Ma (Allegras grandma) is here, I do get a break for the odd shower, coffee  run and blog post.  Bless you Mum for being there for Allegra and me.  I could not do it without you, your love and commitment to us.  We will be forever indebted to you.