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Sunday, March 10, 2019

Ellie's Healing Powers

It's been roughly over a 2 months since we were in the ER on New Year's Eve wondering what the future would bring...wondering if she would still be here...still be whole...still be her sparkling, musical, snarky, happy, sweetie, intelligent self.  (scroll down for this back story)

When the ventricles held their own they tested her for other things and found she was anemic.  The symptoms of anemia are very similar to symptoms of pressure on the brain: fatigue, out of sorts, pain, etc.

We treated the anemia and she is back to baseline and along the way they took several more scans...and still no change in her ventricles.

The doctor's proffered up some scary options...over my dead body types of you may not drill into her skull to insert a pressure gage to sit on her brain "just to be sure there is no pressure"...look to the child for crying out loud and the child was only minimally symptomatic.

There was that whispered hope though that maybe, possibly, her body had figured it out...we'd have to wait and see which felt like playing Russian Roulette with her life. As every parent of a child with any chronic medical issues knows, it's alway navigating toward the lesser evil when it comes to medical interventions. Wait and hope she doesn't get more brain damage or do someting that could give her more brain damage... shitty choices indeed.

We waited and scanned.

Our last visit to the neurosurgeon - who has taken a team approach and discussed Ellie with her pediatrician - I like her because of that - said that she had studied all Ellie's scans and that she suspects Ellie's shunt hasn't been working for a long time. The only clear scan of it is really years ago.

That and the fact that there has been no change.

The plan is this: scan her again in three months. If that is ok, then scan again in 6 months. And if that is clear go to yearly. She suspects Ellie is shunt independent.

This means that our child who left the NICU deaf now has perfect hearing.
Our child whose vision was so very minimal is now at 20/200.
Our child who had ventricles that could not drain the brain's cerebral spinal fluid because they were filled with scar tissue from the bleed, can now do that on her own without extra plumbing...

The messages I have been giving Ellie are that her body has amazing healing powers. That she is so very strong. All of the doctor's visits and the conversations have of course scared her as much as us.
The message is, your body is an amazing healing machine!

She gets a little smile when I say that too her...she's pretty patient with me...

Sunday, February 10, 2019

Can I handle the seasons of my life...

Landslide. This song has been on my mind lately. I have had some massive realizations this last couple of weeks about my relationship with Ellie. It's been hard but so, so good to understand and see what I have been doing to her with my worry about her future. 

It's like I have been going down a big tangent only to be called back to myself.

I have been in high stakes for a long time about what will happen to her in the future when I am gone. That good stress has helped us change our lives to accommodate for more community and driven me to explore the possibilities. That was the good side. The down side which is rather out of whack is that I have been so worried about this and so overwhelmed that this fear is spilling out to her.  And it's a mixed message she's getting that consists of me saying, "I love you, I love you, I love you" and in my head communicating through my stress, "I'm so worried, so worried, so exhausted, so worried, so tired, so overwhelmed." And she can feel that. She can see that in my stress at Dave, in my exhausted visage. And in this way I am pathologizing her. I am inadvertently communicating that she is a burden. I have inadvertently been ensuring that we are all locked into this vice grip. I know I had missed the anemia because I have been so distracted by this future vision and fear. 

The irony is that growing up, I was told I was a burden all the time, directly and in every small way that can really injure a child. That injury, which is deep, and I have been working on has led me to overcompensate with Ellie. To not be so honest with myself about how hard this has been and is. I had this deep resistance to admitting it due to a few things including not wanting her to feel like a burden.  I felt like I'd be betraying my love for her if I admitted how tired and overwhelmed and at a loss I am half the time with all of this. How it's so painful in moments it takes my breath away. How I have to work so hard at self care and failing so often that the pain is palpable in my body. These two things - the deep, deep love for her and the pain of this life seemed so at odds. 

But now I realize I need to be more in the moment. Let go of trying to control it all. Controlling it has been a bad way of trying to manage the deep fear for her safety that is not untrue but also a projection from the past - that overcompensation again. Because I did not feel safe as a child with my parents - I want her to have not a care. It's too much of a good thing. 

In the NICU I remember Dynio, her neonatologist, saying, "Ellie will declare." meaning she'll let us know if she would live or die and what her life would be like. He taught us that Ellie is the leader here. She is the leader of her life. She is the soul that has a path here. I am following her always but recently I have forgotten that - recent meaning for about 10 years. I have forgotten the listen more, to listen to all the bits of help and clues that are always there. Listen to Ellie with my eyes and ears from a more curious lens.  In trying so hard to help her to carve out her path I have been disconnected from myself and her. 

I am awake again. I can let her be the leader and surrender to what it's all supposed to be for her. This doesn't mean I stop caring for her in any way. It does mean that I need to attend to the present moment in all it's vastness while I am in it versus being caught up in the future so much I am not really here. 

When I hear the song below it resonants in so many ways so wanted to share it here. 

I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
'Til the landslide brought me down
Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing' ocean tides?
Can I handle the seasons of my life?
Well, I've been afraid of changing'
'Cause I've built my life around you
But time makes you bolder
Even children get older
And I'm getting' older, too
Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Even children get older
And I'm getting' older, too
I'm getting' older, too
Ah, take my love, take it down
Oh, climb a mountain and turn around
And if you see my reflection in the snow covered hills
Well, the landslide will bring it down
And if you see my reflection in the snow covered hills
Well, the landslide will bring it down
Oh, the landslide will bring it down
Songwriters: Stevie Nicks
Landslide lyrics © Kobalt Music Publishing Ltd.

Friday, January 11, 2019

Inter-Ventricular Shunt Discontinuity and Other Nightmares

Ellie in the ED 12/31/18
Hi Everyone,

I thought 2018 was a rough year. 2019 came in before the ball even dropped and decided it was going to get real.  We spent the better part of December 31st, 2018 in the Emergency Department with Ellie getting a whole bunch of tests to make sure her ventricles were the same size. It started bright and early when we took her to her orthopedic doc to get a spine x-ray to inform those making her new body jacket. Ellie has a bad curve that we are keeping at bay through a number of things including: a back brace/body jacket/ TLSO, daily tummy time and back strengthening, and weekly network chiropractic. Network chiropractic is very gentle and has helped both me and Ellie a lot!

The doctor came in after the x-ray to meet with us and told us that Ellie's curve is stable. But then he showed us the report from the radiologist that said her shunt tubing was disconnected at c4 and c5.  When he told us that my brain when into slow motion to explain it to the rest of me. My thought was, ok... so the tube that comes down from the valve connected to the shunt that goes into.. her brain.. to drain her cerebral spinal fluid (CSF).. that gets stuck in her ventricles because of the scar tissue that formed after her inter-ventricular hemorrhage as a baby... is disconnected....WHAT?!!!!

He calmly advised us to go down to the Emergency Department right away and that they had called ahead and the team there was expecting us.

So that happened.

We got out of there by dinner time - which is really unusual. We only left after all the tests turned up no infection, etc. Her ventricles, thank god, were the same size and still really small.

You might ask, why didn't they just operate to fix the tubing and be done with it?

Good question. The thing is, since her ventricles were the same size, there are two possibilities for what is happening. The first, and most likely, is that the shunt tube formed what they call a "calcified track".  I wish it was actually calcium as it'd make a more stable track. But what they mean when they say that is, the body treats foreign bits in it as something to be contained. To contain the shunt tube it formed scar tissue around it. When the shunt tube broke the "calcified track" began acting as the tube. The problem is that the body will now treat the ends of the tube - the broken ends - as foreign matter to be contained and will calcify around them too. It may only be a matter of time until the track closes. When that happens there will be nowhere for Ellie's CSF to go and will blow up the ventricles like balloons, squishing her brain. This could lead to a number of horrible things including death.

But there is this other possibility which is rare but not unheard of. Some times kids who have shunts do become shunt independent. Meaning - their bodies just figure it out and the shunt may break but there is no change in ventricle size. No one knows why and it's rare.  I wish for this to be the case for Ellie.

AND this is one of the reasons they are wary of going in and just replacing the old tube with a new one. If they do that, and Ellie was actually not depending on her shunt to drain her CSF, then that could hurt her too by over draining the fluid creating more problems.  Additionally, since this will be Ellie's first shunt revision since 2003, the revisions don't usually work correctly right away leading to a "flurry of operations" or so the neurosurgeon said. I am sure it feels like a flurry to them....but you get the idea. There is huge risk of complications from anesthesia as well as infection with each surgery and a huge emotional and physical toll on Ellie. 

Oh yes, and the brilliant neurosurgeon who initially revised Ellie's shunt when we got to Boston 15 years ago because none of the docs in LA could get it right - she's on sabbatical and unreachable. We are scrambling to get a new team together and will meet with them on the 23rd or earlier if Ellie becomes symptomatic.

I feel like I am living in a bit of a twilight zone to be sure. Ellie had been sleeping an hour extra a night and we were saying, "Yay! She's finally sleeping in a  bit like a teenager does!"  But no, of course not. She's a morning bird. So at first we thought this was a neuro symptom, though it wasn't this time.

This last weekend we were back in the ED because she spiked a fever (which could mean an infection). When we got there we also found out she was tachychardic (heart beating in the 143 BPM range) which was really concerning. Again, a ton of tests. Again her ventricles were the same size. Luckily they have this new quick Magnetic Resonance Imaging scanner that is amazing and they don't need to put her out for it. Technology has come a long way in 7 years.

However, they found her hemoglobin was at 7 when it's supposed to be a lot more. Her poor heart was pumping twice as hard to deal with her shrunken red blood cells.

Now I feel like we are in a race against her ability to form scar tissue around the tube ends - meaning we have to correct for her anemia as she's not strong enough to have a surgery if she needed one. After 48 hours they let us go home with an iron supplement and follow up appointments to get her blood tested in two weeks.

Suffice to say, we are on it. I make her this great mushroom soup that's vegan because when she was little I tried to give her meat but she would vomit it up. It is clearly time for a new trial. Dave cooked a filet mignon and we put it in the vitamix with the mushroom soup and it tasted amazing. You couldn't really tell it was in there. It just made the soup a bit richer and Ellie ate it down. She is her father's daughter and he always says he needs meat for his blood when he is feeling depleted. I used to think that was funny. Not anymore.

She is also on a prescription iron supplement and I am redoing all her meals to be iron rich.  It's probably also a testament to her whole foods diet that she didn't appear more symptomatic with this until it was advanced.

It takes about three to four weeks to build up the blood again. I feel terrible this happened at all. Whenever both Dave and I get busy things fall through the cracks and clearly we don't have that sort of luxury in our lives. Nor will we ever. It's also made me rethink what I wrote about in my last post.

Yes, it's important to prepare for the future.  However, I was so focused on that and taking on extra work to prepare for that, that I was less focused on the present. Sitting in the ED on New Year's Eve when we didn't know what would happen I had a reckoning. I kept having these flashes of her empty room and what my life would be like without her. I honestly don't know how I'd ever handle that. I realized I needed to make the most of my time with her each day because there is no guarantee.  I hold that equally with the fact that I fully plan for her to outlive me. But, these episodes have shown me how precarious an assertion that is.

On New Year's day we were all happy to be at home versus at a hospital. I asked Ellie what her New Year's wish was for 2019. She signed mom and then used her voice to say "time".  And I asked her - do you want more time with mom? She signed yes.

I do think she reads my mind half the time.

She is feeling better today as the nutritional interventions help "build her blood".  Ellie is amazing as she ever was.  She's still the most joyous person I know. You could tell almost immediately how much better she was feeling as she would just giggle out of nowhere. Or maybe she was just laughing because the iPad restrictions we put on her were not in use when she was in the hospital. ;-)

She loves a challenge.