Day 99

Today I feel very emotional.  I am so sad that my little Allegra has this disease, that she is unwell and suffering pain.  I hate it that I can't take this away from her.  I am her mummy and I am supposed to make her feel better and I cannot.  My baby girl should not have this going on.  She is an innocent little treasure who deserves good health and a happy playful life.

Allegra and I did not sleep well at all.

Let me blurt it all out:

Yesterday we had a meeting with the Oncology Team, Nutritionist and many others.  They were talking about a plan to get Allegra and I home for a few days.  Sounds great doesn't it?  So many logistics to consider. Allegra needs to be on oral pain relief, tolerate her nasal gastric feed and  blood counts recovered.

Her IV opioid needs to start decreasing so we can begin oral pain relief, her TPN (nutrition into the veins IV) needs to cease once Allegra can tolerate her nasal gastric feed and I need to be trained up - that's the easy bit.  I am so excited to be nursing my baby and having her home.

So here we go with the one day at a time; 

Last night we reduced the Fentonyl from 3ml per hour to 2 ml per hour then it was supposed to come down another 1ml 12 hours later.

Her nasal gastric feed (MTC Pepdite) started running at 5ml per hour then increase in the morning and build it up to 40ml per hour.  

Allegra did not tolerate the 5ml Pepdite, she has had loose stools and vomiting.  The Fentonyl has not been reduced either and she is still Neutropenic, her blood counts went the other way.

My baby is doing enough to fight infection, recover from chemotherapy, deal with her disease, grow bone and stay on top of all the side effects from medicines.

I want my little Allegra to do it in her time and not the doctors' time or mine.

So I doubt we will be coming home on Monday.

Btw today is day 99, no wonder I am emotional.