Allegra woke a happy baby this morning Thursday 22nd March 2012 and because she was happy so was I, but behind smiles and playing I was somewhat anxious. Anxious about today's procedures and the results to follow.
We had a lovely visit from Nicky and Joss and they bought me up my 2nd favorite thing in the morning - coffee - soy latte with 1 sugar. My favourite thing is hearing my little Allegra call out "Mummy up". I love our good morning kisses and cuddles and talks. I miss her so much when she sleeps. Mar Ma and Nanny Di soon arrived with kisses, cuddles and loads of love.
The doctors came around and ran through today's events:
Bone Marrow biopsy the aspirate and trephine
Lumbar puncture (LP) with her first dose of Cytarabine (chemo) injected intrathecal L4-L5
Vac dressing change
Stat lock change (internal lines lock)
Nasal gastric tube re-taping
Theatre was going to happen at 11am. Allegra was ready to go, hat chosen, pretty's on (bangle and bracelet), we danced down the corridor with our medicine pole. She was giggling so loud and screeching with joy and happiness. We bumped into daddy and he was happy to see a bright little girl having fun dancing and twirling around. We were early for theatre so Nurse Kaitlin took us down to see the fish and sharks, we were there for only a short while as Allegra wanted to keep walking. She doesn't walk, she is in my arms but we call it walking.
We arrived in pre-op and were greeted by nurses that have looked after Allegra in recovery and Platypus ward (orthopaedic), it's always lovely to see familiar faces and they all commented on how good Allegra looks and loved her chosen hat.
The anaesthetist examined Allegra and we spoke about her previous anaesthics and I signed the consent. Kathy our preference Haemotologist came in and I was very relieved to know that she was performing Allegras biopsy and LP.
Oh no Mason (Allegra's treasured dog) was not there with us. Quick go get him! It would have been disasterious if Allegra had realised he wasn't there or we had to go into theatre and then I realised he was still up in the room. Just in time Mason was in Allegras arms. Phew!
They came for us, off Allegra and I go into theatre. Immediately she started looking around and saying no no mummy, climbing higher and higher up in my arms. I held her close to me and whispered our Mantra as she went off to sleep. I laid her down, turned quickly away before they put the mask on her face. I am out of there and ready to pace my grounds.
Walking around my track many thoughts race around in my head, I can hear people talking to me but I pay no attention. Luckily it was my Mum and other Mum (Aunty Di from Perth), love you both very much and thank you for always being there with me and for me. I can not rest, think straight or concentrate until I am back in recovery with her. Time goes so slow and I feel so far away from her when my little Allegra is in surgery.
We go into the waiting room, play scrabble on the IPad and await to be called in. The door opens "Allegra's parents". I jump up and head towards recovery then start to run as I can hear my little Allegra screaming. I followed her scream until I got to her. She was thrashing about in the bed, eyes shut and screaming. I put my face to hers, spoke in her ear it's ok mummy is here. She was so distressed. I picked her up and held her close to me and she breast fed but continued screaming in between feeding. I was soothing and comforting her but was also encouraging her to scream it out baby, let it all out. I could not understand why she was like this until I learned she had not been given ANY pain relief as a pre-med, while in theatre or until now and her regular pain relief medicines were nearly due. What??? This is absurd!!! Allegra has never had a dressing change without pain relief. Just because she was asleep and could not feel it - this is not a reason for NIL pain analgesia. She is going to wake and feel pain. Allegra's best interests were obviously not thought about or were there too many cooks? I continually hear "we are doing our best", "its Allegra's best interest we are thinking of". I am mortified and disgusted. This was totally avoidable and not fair for Allegra to have had to experience extreme unnecessary pain. Who is responsible for this neglect? Why weren't her drug charts looked at either by the anaesthetist or her assistant?
She was immediately given her regular dose of Oxycodone with her break through dose and an "equivalent dose of a 10ml bolus" of Fentanyl. This was administered by the anaesthetist and recovery nurse.
When Allegra was having her dressing changes in the treatment room she would have her pre meds of pain relief 30 minutes prior and 1ml bolus every 5 minutes. I think she only ever had 3mls in total.
Allegra finally settled cuddled up in my arms with Mason tucked under her arm, breast against her cheek and dummy in her mouth. I breathe deeply in and out and kissed and kissed and kissed her forehead telling her how proud I am and that her I love her to bits.
It's been 3 hours now and my little Allegra is still sleeping with the occasional snore while I type this to pass time and relieve my anger and frustration.
I await again for results.