more and more

So now I have been told that despite her CMV negative on admission status, she’s been given CMV untested products 4 times.  Then I was told that the Dr. yesterday was wrong and it’s not an antibody transfer risk, it’s an actual viral infection risk.  Which in Ruby’s case would be life threatening right now.

Then I was told the policy is across Canada that neutropenic patients (those who are immune compromised to the n’th degree) don’t receive CMV negative products unless they are awaiting a transplant from another person.  Then I read three province policies from 2014 that are actually completely in opposition to this “new” policy here in BC.  Which negates the Canada wide theory, also it questions the validity of that decision.  Then I read a bunch of articles on how CMV is a really big mortality risk in patients such as Ruby and also for patients receiving their own stem cells.  Then I was told that CMV negative products are held for transplant patients only (greater good evaluation) which I think is great and then I was told she was given CMV negative just because her’s need to be washed and with the luck of the draw they gave her older platelets that just happened to be CMV negative because no one has been needing the CMV negative platelets.  (Greater good not required as often as thought?).

I requested a retest of Ruby as of now to gain her current CMV status.

Then I respectfully requested CMV negative products until that is established.

I had to correct the delivery of the information this morning to a more respectful tone towards me.  And then I was asked why Ruby was receiving a certain volume of fluids in her line.  Which I replied to in a very respectful way.  I am not the one who sets the volume of fluids nor am I the one with the ability to assess the volume requirement.  That would be a decision made by the doctor, therefore, if you feel she does not require that amount of fluid, perhaps you should reduce that?  Yes.  Don’t question, don’t ask, don’t educate yourself but you as a parent are 100% responsible for accepting and signing off on any drugs/treatments/blood products given…..without education on risks or current policies, without information and without questioning.  What a fantastic situation.

Please forgive my current disillusionment.  Please forgive my current disbelief.  I just think that blind acceptance is not applicable nor is it proving to be safe.

Oh Donna, you made me cry!

Sometimes you get the right nurse at the right time.  The one who holds you while you sob, the one who makes you look in her eyes while she tells you to never say you are sorry for advocating for your child and the one who says how proud she is of us for being strong enough to say no.

http://www.health.gov.nl.ca/health/bloodservices/pdf/cmv_version_1.pdf

Another thing to learn about blood transfusion.  There is a virus in blood products that everything gets tested for.  If you read this small article you see that cmv positive products should not be given to a. people with cmv negative status, c. with no functional immune system, or c. facing any sort of transfusion of stem cells – especially if harvested in an cmv negative state.

So today they came to me with a bag of washed platelets that did not have a CMV negative sticker on them.  I said, well, why would you bother giving her CMV negative blood but not be concerned with the status of the platelets and no one could answer me.  They got the hemotologist on call in here (you have a 10 minute window in which to deliver these products to the patient’s blood) who then could not explain why suddenly this sticker was no longer important and why you would give a neutropenic child this product with this risk of antibody contagion.  He said it was because she was not up for an organ transplant or a stem cell transplant from someone else.  I reminded him that she is third round chemo, post stem cell harvest and her stem cells were upstairs in a vault on the 3rd floor in a CMV negative state awaiting re-infusion in less than a month.  I asked him how it made sense to give her CMV positive antibodies (by exposing her to cmv positive platelets) when her previously harvested stem cells are negative.  How is this any different from any other transplant situation?  The cmv status must match or the transplant can not occur.  This would mean that all the freakin stem cells we harvested in January would not be able to be transplanted back into Ruby come the appropriate time. (Which by the way, if her bone marrow doesn’t start making white and red blood cells soon, we might need those sooner than later).  He stopped and said “good point”.  So I said, take the bag down, you are not giving Ruby those platelets.  Which is hard.  Because I’m a bloody musician.  And sometimes I paint bad pictures.  I’m not a doctor, nurse, blood specialist or otherwise and I feel so insanely outraged that I of all people had to come up with this logic.  That I had to diagnose the potentially devastating effects of a choice made out of convenience, regardless of safety and my estimation of the Blood Services folks drops even further.  Further than it was before when we fought for 2 months to have washed platelets in the first place, where they don’t accept Ruby’s “type” of escalating allergic reaction as a reaction until it became extremely concerning that the next reaction would mean the ICU.  It’s astounding.  What is equally astounding to me is trying to find a place inside me that can trust the people who study this for their professions.   Oh ya, this too: http://www.cmm.ki.se/en/Research/Cardiovascular-and-Metabolic-Diseases/Cell-and-Molecular-Immunology/Cia/Our-research/CMV-infection-in-cancer/

And you wonder why I question modern medicine.  It’s as if we teach these concepts and treatments separate from each other, how the interaction between nutrition, blood, chemo, cancer, mindbodyandsoul are disregarded.

I had to take a very fast angry walk down the hall after this.  I just left poor Brian in the room, no clue if he was as mad as me, (to be honest, he has a better handle on “letting things go” than I do) I just needed to make sure that I didn’t strike anyone with my lightening.  I kept thinking green green green heart chakra, come on, green green green….love, compassion, acceptance, love love love.  But I’m still a little mad.  Well…thunderstorm girl here will get over it.  I get rather redly mad for a short time and then I can breathe again.  This time however, I’m very very tired.  Tired of having to go and educate myself in 5 minutes about blood, another infection risk, transfusions, and risks and then speak to it in a logical, clear manner.

I’ve held it together pretty well but today took the cake.  Took the cake took the icing, took the filling..just took it all.

Damn that nice nurse.  She made me cry and taught me something.  Don’t say you’re sorry when you are keeping your child alive. Don’t.  It’s not needed.

Down the rabbit hole

4am, massive vomiting and spikey fever.

I hadn’t actually gone to bed yet.  I was trying to push a bit more food into her to try and get us past the 650 calories a day mark that we’d been able to achieve.  Actually, this is an arbitrary assignment of calories. When Brian can drink what we make Ruby and not eat until dinner with little weight loss (sorry Brian :)) and LOTS of energy, I’m thinking simple calorie calculations aren’t what they are cracked up to be.  They don’t take into consideration the actual energy that food gives us.  Our comprehension of how the body works seems more and more limited the more I research what we DO know. 

Anyhoo, Ruby is sleeping now, very pale.  I’m back down to pushing 25 mls per hour. We had her up to 40 but well, time to back off I suppose.  Her counts are still at zero, things are still tricky.  She’s on a bunch of meds now, the antinausea meds (as well as ginger in every feed), the anti-fungal meds, the antibiotics, the anti dehydrator, get the pattern? 

So if you have any spare goojoo’s to send, please send them to the ether to channel to this little tiny girl who is sitting at 19.4 kgs, is almost 8 yrs old and is very very pale.  I’m trying not to worry.  The wolf still guards the door.  Thanks to the very vocal Italian family in the next room (which btw is chockers full of love and good energy), the cleaners have changed their approach to our two rooms.  It’s the cleanest it’s ever been.  It’s amazing to me that cleanliness is the first step to health and eliminating the spread of disease but our hospitals are shamefully filthy.

much love

y

Confessions and gratitude *freakflag flying alert*

Hello you interconnected web of loveliness!  I just want to share something really special with you.   You know how you have something happen in your life and put out the universal call of help and then suddenly this person you haven’t spoken to in 4 years shows up with a door to a whole new world?  Well that happened to me with my friend Alison. (Standing right there with my parents who beat us to the hospital by 4 hours…equally amazing :)).

Alison held the door open to a whole world of healing energy work and enlightenment that I couldn’t have accepted as completely as I could in this wide open searching state.  Then this village we live in opened their hearts and rounded up a bunch of monetary flow that allowed us to all stay together throughout this crazy ride.  Flow.  So the flow keeps going to Starbucks but that’s a different story.  That’s more about staying awake 20 hours a day for the last 5 days to get to a point where I don’t want to hide the magical side of this journey from you.  Shield’s down, I’m transporting you aboard for a confession of spirit. 

I’m wary of sharing this sort of stuff because well, some of us aren’t ready for these conversations.  They might seem a little wack but when you are in these situations, wack stuff happens.  Magic happens and our capacity to accept it as real exponentially increases.  Or logarithmically – you math heads can correct me.

So there is a wolf hide under my bed in here and I can “see” it when it’s actively pacing the room, it lies in front of the door.  Strangely enough, not too many people are coming in.  Exactly as we need it right now.  This wolf hide is part of Tom, our healer from here who works with First Nations spirituality and has taught me to “see” differently and more completely.  This beautiful wolf hide came as a donation from a wonderful person up north in that little village we love and was intended as a gift to Tom. When he opened it, that was clearly true.  It is a very very powerful gift.  Thank you.  And thank you Tom for letting the wolf keep the threshold clear of …whatever it is that’s not supposed to come in.

The other day, about a week ago, I had a dream about medicine wheels and making one – a HUGE one for Ruby.  Now this comes on the heels of working with Laura to ask my ancestors for guidance and support. This means to accept all of my ancestors as supportive energy and not to reject any part of it.  I have been actively working on that on all sides of my family line and for some reason the side that connects the clearest is probably the thinnest side of my family tree.  It occurred to me when I woke up from that dream that we work with the spirits, energy and strength of place more than anything.  If I was in Scotland, perhaps I’d be calling on Celtic spirits.  Here it’s definitely animal and First Nations spirits who are present.  That’s not to discount the support and guidance I sense from all of our ancestors but it’s the one that seems to root me the most.  So I’ll go with it.  Thank you Laura and thank you Wendy for keeping me from over analyzing this and just hearing/seeing/feeling my way through.

Anyway, back to the medicine wheel.  That’s the background.  So I found this website after much searching that just resonated with me.  It gave me such a vibrational buzz.  Here:  http://www.shannonthunderbird.com/medicine_wheel_teachings.htm.  I was reading through it that night and tried to work out something personal to support Ruby.  I thought maybe just thanking the owner of the site and letting her know our situation, my dream and ask for any pointers would be a good idea.  So I did.  Well the funny thing is, it turns out she’s not too far from here.  She emailed me back right away with not only pointers but a plan and very clear instructions as well as info on medicine bags which I hadn’t even considered.  Some of the advice was also for me.  She was loving and kind and so helpful.  I’ll get on the plan when we get out of here, can’t have willow in the room – they’ll make me take it down due to the “fungus” fear in here.  I will draw it out with animals and hang that up while we are in here. But that’s not the best part.  Typical me, I thought I HAD emailed her a thank you but every day seems like the same day in here and I forgot.  I emailed her a heartfelt thanks and an update last night.  Shannon emailed me right back with news of a song that came to her for Ruby.  Just like that.  Last night.  Thank you Shannon Thunderbird. You are surprising and wonderful.

Wow.  Life is just simply so amazingly flowy and precious.  No matter what happens, I finally feel like I’m not longer a bit nutty, that there is room for my nuttiness in this world and that to connect with what works is all that is important here.  I feel like a new person, a better person, at the very least a better mom for Ruby. 

So enough about me, the Ruby update at present is BP holding but low, another platelet transfusion, probably bloods tomorrow, she’s weakened and tired and not eating due to mouth sores.  I’ve tried almost any food you can imagine but her fear is bigger than her hunger right now so I’m not winning the battle today.  I just keep juicing her line every hour or hour and a half.  I’ll have to do so all night again tonight because of the platelet transfusion.  Don’t want to confuse anyone if she reacts to it again by compounding the mystery with a feed in her nasal tube at the same time.  So this means I lose 2 hours of feeding.  *sigh*.  I try not to freak out about it now.  I just trust that I will have little naps all night and have these crazy dreams like last night where I was again trying to find an apartment in my old eastern city and kept ending up with 1 1/2’s instead of a 4 1/2.  Couldn’t fit everyone in.  Especially when I was expected to park my car in there too.  Thanks to Brian’s picking me up a wonderful camp cot, I’m super cosy at night and instead of trying to find a spot to sleep on exposed and uneven springs, I have a wonderful nest.  I guess that’s my thanks for the day.  I even scored a hug from Amber today!  She’s another mom in here I truly dig.  It’s nice to find a kindred spirit in these hollow halls.

Still here. As in, not “outta here”. Yet.

so, lalala sitting on my cot in the hospital, looking out at the 4 feet of sky above the steel wall across from us out the window.  It’s a cloudy day but bright.  The dogeweather.com says it’s “much terrible, such frosty” but I don’t find it too bad.

Ruby’s been snoozing since about 11pm.  We had another My Little Pony marathon and snuggled up for a bit after she had some atavin to calm her down after the encephalon went into her leg.  It was incredibly traumatic.  Again.  So once a week we have to replace this little injection port in her thigh (just below the skin about an inch long) so that I can inject her with GCSF to boost white blood cell production.  In case I haven’t described this already.   The injections are going wonderfully now…she hardly gets scared, we talk about not letting the pigeon drive the bus and she connects with her fear and the fear of pain and we send it up to the universe to change back into love.  The port though..wow, that’s another matter entirely.  For Ruby, this port change is everything that this place is to her.  It’s terror incarnate.  These are her words:  she’s trapped forever here like this with no hope of ever seeing home again.  She’s trapped without her dog and her cat and her brother and her dad and her bed and the chickens (whooops, we’ll need to replace those before we get back) and the quail (well, these are easy to find).   She says she’s so so so very tired of hurting.  So tired of BEING hurt.  Deliberately by other people.  Even though she gets the whole means-to-an-end….she’s is expressing what we as grownups feel when trapped in the medical system too.  She’s just clearer at shouting it out loud and screaming her rage at the entire situation.

She is being hurt.  She is being trapped.  There is no denying that.  So there is simply acceptance and love and comfort and My Little Pony.  Today though there is sleep.  Gentle doucement do-do.  The wolf prowls the room and lays across the door, protecting us from any interruptions.

You know, for what it’s worth, this experiences has widened my heart,  shown me magic, given me a chance to completely devote myself to my child and practice compassion and advocacy.  Much learned, much to learn.

The “let’s get outta here” club

Sitting on the needle wasn’t part of the plan today.
My bed is full of fabric and bendy, pokey pipe cleaners.  Ruby’s obsession.   The pipecleaners that is.  I’m busy sewing clothes for dolls but boy…this isn’t 1800 and my sewing skills are rusty.  Fortunately so far I haven’t completely blown anything.  Though I did have to hide one skirt that didn’t make the cut so to speak.

Note on the door: No visitors….counts at zero has been respected today.  Though I have to say that I could really use a Holling hug…one that ends with me choking for air while he licks me.  It’s been a long long day and man oh man, still going on the 1.5 hour schedule though I did have a short nap from 3-6.  I’m burning through my ebook collection of Xanth novels.  Nothing too challenging for this little brain.

Right…so just so you know, the other joy of being in here is that this hospital is under construction all the time.  Right now though I’m thinking downstairs someone just turned on the faulty fan again that vibrates through the floor and makes me feel like I’m back on that boat in the middle of the night on the Bass Strait….waaaay below in the cheap bunks.  Buuuuzzzz…hummm..buzzzz..bang….buzzz…this went on till 1am yesterday and the day before that and the….

Ruby’s having a snooze right now after a Wild Kratt’s marathon…crazy for Kratt Brothers she is.  We have this collection of the DVD’s and I swear she’s memorizing all the lines.  Just like she does with My Little Pony and Littlest Pet shop.  Well at least with this one she’s learning some animal facts and not just PinkyPie strategies for good times.  Though I have to admit, PinkyPie really has it going on.

We’re working our way through some Judy Moody  – which we find funny as one of our ancestor’s names was Moody  – saving our last Ivy and Bean for the next book.  We burn through them pretty fast.  When we are in here, I do the reading and when we are out of here, Ruby holes up for hours at night reading to herself.  With all her friends and stuffies, there’s hardly any room in her bed for me but I insist so we can snuggle up and read as late as she likes.

Yesterday we made a pact.  We are both part of the “let’s get outta here” club.  It’s the thing we remind ourselves with when injecting the GCSF at night in her thigh…reallllly realllllly slowly while she takes deep breaths and connects to the “love fountain”.  It’s also the thing we say when I have to do the feeding tube and she moans at me to stop it in the middle of the night.  I tell her we are just part of the club man and we will do what it takes to get outta here.

PS: I have to say, the reiki thing is really really working for me.  I don’t know if it’s simply sleep deprivation or what but I try to do the qigong and reiki on Ruby and me at least once a day and wowza…seriously…I’m a little loopy but I’m not insane or tired or grumpy …although I did growl at a waterbottle that fell three times.  In a row.  Off of a table.  A perfectly flat table.  Grrrrrrr.

Every 1.5 hours, another 35 mls

Hi everyone. Sorry for the delay.  Been crossing swords a bit at the door with folks again.  I know.  Ya.  But I’m not a yes man when I see a situation that is illogical and founded in the craycray. 

So yesterday I was taken to task for Ruby’s weight loss.  Well, she wasn’t tolerating any feeds without 2 antinausea drugs.  So we went as slow as they would have with a bag feed anyway.  Same rate, better food.   The next step is to increase that.  Well found out this morning that 50 is way too much so back to 35, safe zone.  Every 1.5 hours.  All night, all day.  So this is the hard few days for me.  I should be completely incoherent by 4 am tomorrow.  Maybe I’ll have a nap then.

So, the funny thing was when I was taken to task for this (which by the way was the result of our “family meeting” with the 8 docs and Brian and I – very friendly) she was concerned about not having a backup plan.  What I SHOULD have said was “uh, this IS the backup plan.  Your plan was not well tolerated, therefore we decided on this one.  Therefore….we ARE on the backup plan.”.  She figured premeding Ruby with a bunch of benedyrl and pushing this feed she is allergic to is a great way to feed her.  I laughed and laughed and said uh, no.  No thanks.  It’s part of our care plan.  I’m not sure why if we already had this big meeting to determine that she doesn’t tolerate the feeds they give and there’s nothing else they can give due to her allergies……and also to give her washed platelets (which is btw the battle this hour)….why would I need to recover ground we already covered.  And why in such a confrontational defeating, non teamlike way.  I mean, aren’t we on the same side?  Ruby’s side?  Aren’t we supporting each other?  That would be nice.  Every time I have to defend decisions already made I truly feel retraumatized and instantly needing to defend this doorway. So now I need to reexplain again.  And again.  She needs washed platelets.  The end.  I pointed them back to themselves and said, your process is not something I can fix or even comprehend.  All I know is we’ve established some treatment needs, written them down,  had numerous meetings and come to understand Ruby responds differently than the median patient.  So ya.  It’s like being hauled into the office to explain something, everyone coming to an understanding that appears to be supportive and more like a cohesive approach, then to have it written down and made into a sort of “policy” and then….when I’m following this plan and supporting these decisions, suddenly it’s as if it’s completely forgotten and reset back to default.  You know, like when you pull your battery in your computer and bango, it’s back to defaults.  *sigh*.  It’s a battle followed by a conversation followed by a battle followed by me standing at the door and asking when we can be released.