Hello all, sorry for the delay in posting. It’s been a rollercoaster few days. Ruby had a severe reaction (again) to a platelet transfusion and to the neocate they said no one is ever allergic to. I figure upper lip swelling and vomiting a good sign of a food sensitivity considering nothing else had changed or gone in. Unfortunately this wasn’t agreed with based on the above philosophy of “no one is ever allergic to this”. Either way, it was the weekend, I just started juicing and feeding through her line every hour and demanded a stop to the neocate. We were losing ground. Her ketones were through the roof, she wasn’t eating, had developed mouth sores from the chemo and things were not good.
She was very weak, very depressed, utterly despondent.
She just wants to go home. To go out of this place and not come back.
I’m with you there Ruby, I’m with you there.
So in the interests of keeping her alive in an unconventional way, I worked out a formula of (I had to give in on this point – duocal for the fat as the coconut oil solidifies in the teeny tiny feed tube) and kale,chickpeas(did you KNOW you can juice that?), apple, grape, spinach (not too much, hard on kidneys), carrots, avocado (which ended up being too think and requiring too much filtering), vega protein mix (again, not toooo much due to kidneys) and celery. So ….every hour for the first 24, every hour or so…..the next day… (fell asleep for 4 whoops), Monday reduced number of times and increased size of feed to 40 mls per feed and then here we are on Tuesday, fewer mouth sores, ketones gone, counts recovering (white blood cells) and a boost in her spirits.
So that’s why I’ve been busy. And typing less. I’ve been rather focused on keeping ole Rubes alive. It’s fun though, I’m turning into a juicing lovah.
The platelet response. Well. I said it since we got here. This is a sensitive kid. You must give her washed or saline replaced platelets. Each reaction becomes cumulative for this kid. One day she isn’t allergic to it but you expose her enough….each little reaction will make a bigger one the next time. I think this might be pretty standard for allergies. They develop. Not just appear. The fun part is convincing them that despite her not having any neutrophils or discernible immune system function right now that she is still having a reaction. Fortunately and unfortunately Ruby demonstrated that despite that….you can still have an allergic reaction. And a scary one. So…..today…more platelets. Today…they will be washed. Today I realized that as her advocate, saying things politely seems to get me nowhere and doesn’t keep her safe. It wasn’t until I spoke very firmly and clearly to the docs that this was heard. Shame huh? There is a feeling that you are included in the plans that hospitals make for your kid that you have a say that you have some control over how treatment is conducted. I suppose I learned a lot this weekend. I think we are all on the same page now. We had a meeting with the team, we all discussed her needs in here and came up with a care plan.
I have to say through all this the nurses are awesome. They see everything, hear everything and know whats really going on on the ground level. The docs are ok too..they just don’t seem to view things in a complete picture sort of way. Difficult for them I’m sure being that there are more patients per doc than patients per nurse. But, I think my old doc back east had it right. He developed a course for new docs at the uni he was head of family medicine for. He created a compassionate care course that taught doctors to listen to and value their patients opinions and to make sure that this wasn’t lost in the establishment of treatment plans and care. You go Dr. Daws, you go. They do try here though I find it’s reactionary rather than preventative.
I’m still debating nutrition with the dietician though they can’t fault the formula that’s getting her better right now.
We shall see. If I can just get her eating enough, the tube can come out…we can get up and about and perhaps even out the door for a while.
Big love to you all. If you thought I was granola before…..look out. I’m armed with a juicer now.