I'm trying to decide which Bible story is similar to my last couple months. Have I been in the lion's den? The fiery furnace? In an ash-heap? In prison? Fighting Goliath? Or simply walking further out into this man-made wilderness? Which is it? It's seriously up for debate in my head and it's been making me crabby.
Just being real.
Thus the reason I haven't been writing to you. Who wants to listen to a crabby person vent (other than my mom, jk 😂)? Certainly not you, and I respect that.
That said, I have good news for you by the end of this post. I promise.
What I'd like to share is the truth about my experience with Olivia over the last couple months. One word was king......Assumptions.
We've all heard the expression, right? Don't assume.....it makes an a** out of u and me. Silly...right? Or might this just be dead on?
Most of Olivia's really bad days have begun with assumptions, and the last several months have proven this to be true.
Assumptions are all you have when your child is non-verbal and not able to communicate with you. On January 20th we assumed she was having a "rage" adverse reaction to the medication Keppra since she has experienced it before. Just ask her elementary teacher and aides....scars from her gouging their arms probably still exist. It was a sensible conclusion, but this time her rage was directed at herself. Self-harm. Gouging of her face. This post explains the details.
We assumed and we started weaning in the hospital, but the self-harm continued. A CT scan was done and it revealed that she actually had an abscess in her mouth that was hidden from our sight. We assumed the root canal an ENT performed a couple years ago had worked. She was in pain and could not tell us, that is, we didn't think she could tell us. In reality, though, she was. She was screaming at the top of her lungs, eventually having to intensify her message because we just weren't getting it. She upped her game.......with the clawing of her face....the constant biting of her hands and the constant writhing in pain.
At the time this CT finding was a blessing, I sighed with relief. The surgery to remove the abscess (and unfortunately 2 of her front teeth) was done and I was anxious for her to recover so we could return home.
I assumed wrong.
When she returned from surgery I was met with members of the pain and palliative care and infectious disease teams, and this is where the assumptions ran wild.
Standard of care for pain. Opioids+.
I was told she would be getting the following medications:
Unasyn for the "possible" abscess infection.
I told them. "Olivia does not do medications well! Her body does not break them down properly." "This is too much for her." "She had an abscess in that exact same spot before - she did 7 days of amoxicillin and OTC Advil ---- that's it!"
If you get me, you know I am a fierce advocate for Olivia. But, unfortunately that didn't matter. They are the experts - I am nothing. In an instant, I'm reminded of a clip from the movie "Matilda" I've shared on my blog before - "Listen you little wiseacre. I'm smart, you're dumb --- I'm big, you're little. I'm right, you're wrong, and there is nothing you can do about it."
And that there is truth. There was nothing I could do about it, and that's where things took a turn for the worst.
High fevers, every day for a month. Liver enzymes elevated. Pancreatitis. She needed enema's and catheters to eliminate. Visits from other specialists due to other elevated blood tests. Endocrinology, Gastroenterology, Radiologists, Pharmacogenetics and towards the end, the Physical Medicine experts.
I'd like to invite you into her hospital room - number 5020. This small room where I ate, slept and sat for 8 weeks..... watching my daughter slip into a world I had never seen before. In a sense, I likened it to a "lion's den" and daily I was thrown into the "fiery furnace" of despair and worry as they checked off the testing of one horrible and critical disease after another. Scans and X-rays repeated over and over. Waiting for test results became excruciating. "Goliath" visited me on a daily basis as he became more and more frustrated with normal test results as the "fire" of her daily high fever became ever so intimidating. They exhausted all the causes ---- except for one. Drug reaction. Multiple drug reactions. DRESS (Drug Reaction Eosinophils Systemic Syndrome).
aka - poisoning.
When we checked in on January 20th she was sitting up, eating and drinking real food --- walking to the bathroom and so strong with the self-harm they had to put "No-No's" on both of her arms. They even considered putting her arms in restraints. The darkness hid the abscess, but even with the unknown infection, she did not have a fever. The fevers began after the onslaught of the medications. Can you even imagine taking all of those medications at the same time for days on end? Can you imagine losing your ability to control your bodily functions and not be able to tell anyone? Excruciating to think about. Excruciating to be a parent and to have to witness it, unable to do anything. You know why? Never once did they believe that their standard of care was responsible. They assumed that her fragile body could handle all those medications, and because of this assumption it then became her fault. It was her "underlying" condition that caused it all. It had to be because their "superior knowledge" is infallible. Period.
This elusive "underlying" condition. What exactly is it? They tested her for everything under the sun, including every known autoimmune test....every cancer panel. Everything came back normal. The real cause became the elephant in the room. Each morning the "team" would file in, carefully slipping past that darn elephant that grew larger by the day. Towards the end of our stay, I watched them closely as they entered the room. My minds eye saw them sheepishly squeeze by the room full of truth and pridefully announce the following assumptions:
- Olivia's fevers were/are a result of her "underlying" condition and it's a defect in her brain (even though they did not see anything on an MRI.)
- Olivia's newly acquire hypertonia (which she did not have at admission) is a result of her "underlying" condition and it is her new normal. (To me it looked like severe Charlie Horses).
- Olivia's inability to use her left arm (which became floppy and unusable) is a result of her "underlying" condition and it will be her new normal.
- Olivia's inability to sit up or hold her head up is a result of her "underlying" condition and will be her new normal.
- Olivia's extreme weakness and inability to eat and drink is a result of her "underlying" condition and will be her new normal.
Finally, one morning I thought about everything that had happened and the rush of emotions crashing down on me. Daily. Isolation...confusion....condemnation.....discouragement....fearfulness. In an instant I'm reminded that these feelings....these emotions are liars. This liar was wearing me down, leaving me frazzled, stripping away my courage. From that point on I redirected my attention to God's word ferociously to remind myself what comes from Him. He stills me. Reassures me. Calms and comforts me. He enlightens me. Intimidation was not His way.
Finally, the insanity was made complete when the aloof Physical Medicine doctor and his lovely assistant swooped in like vultures to render their final and prideful opinion about Olivia and the poor prognosis they had for her future. No time to listen to what she was doing 8 weeks prior. Her muscles were not tight when admitted. Her arm was strong. Her back used to straighten. She was walking.
No rehabilitation. She didn't qualify. Drugs. That's what she needs.
I tell you this not to berate anyone, but to only tell the truth of what happened. Assumptions regarding powerful medications, incomplete knowledge, prideful ignorance with absolutely no wisdom.
And then they sent her home. A new version of disabled. The weakest I've ever seen her. Her "new normal" according to the Children's experts. All because of a simple, run of the mill abscess that was not systemic. The same exact procedure was performed in an ENT office a couple years ago.
She used to walk up the stairs to her bedroom. Not anymore. We have a mattress on the floor in our office. She used to walk up the stairs to take a bath. Not anymore. Sponge baths on the floor. She used to eat with her adapted spoon. Not anymore. NG tube feeding. She used to walk to the bathroom. Not anymore. She used to sit up on her own. Not anymore. We need a Hoyer Lift.
It has been extremely trying. I've tried to recount and claim the many times she has gone backwards and recovered her lost skills. One night while laying next to her as she drifted off to sleep I realized that it's been her that has been in the lion's den. Seizures have been her fiery furnace. She fights Goliath daily. 18 years she has lived in an ash-heap. Her entire life she has lived in a prison, which is sadly her own body. Together we've been traveling in this man-made wilderness and in that darkness I again entertained the idea that we were and are total and complete victims. Especially with this last hospital stay. It was like one last kick to the curb. That's it. I was up all night.
Wallowing in victimhood.
But then.........I got up and started moving in the new day and I heard an incredible song ---- "I am no victim" by Kristene DiMarco and I knew it was just for me.❤️
I'm reminded...... with God.....
I am no victim. I live with a vision
I’m covered by the force of Love. Covered in my Savior’s blood
I am no orphan. I’m not a poor man
The Kingdom’s now become my own
And with the King I have a home
He’s not just reviving. Not simply restoring
Greater things have yet to come
He is my Father.I do not wonder
If His plans for me are good. If He’ll come through like he should
Cuz He is provision. And enough wisdom
To usher in my brightest days. To turn my mourning into praise
I am who He says I am. He is who He says He is
I’m defined by all His promises. Shaped by every word He says
If you're like me and like live worship video's, here's her live video:
This live version is my favorite. I crank it up so loud I lose myself in the message. That's just what I do to crawl out of the pit of unbelief and darkness. Music. Loud. My mom always says "Why do you listen to it so loud?" Until this round of adversity I always assumed that I need it loud to release my sorrow. As I sit here tonight, the clear whisper I hear is that I need it loud to blast past my head.....past my thinking....past my logical determination of the dire circumstances I am living in with Olivia. I need it loud for it to bypass the "intellectual arrogance that opposes the knowledge of God. (2 Corinthian's 10:5). It's the only way for that much needed God sized Hoyer lift to lift my heart and the rest of my earthly baggage out of this deep, dark pit I find myself in when Olivia tumbles down.
I've realized that I don't have to assume God's promises for Olivia's recovery from this assault...I just need to continue to believe. Like the song says....I am who he says I am.....Olivia is who He says she is......Healed.....Abundant Life....Christ Like.....Wonderfully Made.....A New Creation.....An Overcomer......
My faith says she'll come out of this and she won't even smell like smoke. (Daniel 3:26-27)
p.s. I would like to send a shout out to the amazing nurses, csa's and several doctors who were champions with Olivia during this very difficult hospital stay. I'm grateful for your love and compassion.
Dear Kelly...My heart just aches for you and Olivia and for your other children too. This latest ordeal has been so long and so difficult. You get knocked down and you get back up over and over again. Your faith continues to inspire me. I think of you feeling helpless as you watch Olivia suffer and I can't help but think of Mary feeling helpless as she watched Jesus suffer. I hold you close in prayer and wish I could do more. Sending much love to you. God bless and take care...ReplyDelete
Thank you so much Jeanette. I am so thankful for your powerful prayers❤️Delete
Dear Kelly,I follow your blog for a long time hoping for better news, that at least someone will help your child. As the mother of twins with disorders very similar to your daughter, I meet up with the same disagreement doctors and therapists. Drugs, drugs and only drugs. I intervened a few times and turned down the proposed therapy and I was right. But it is impossible to take responsibility for the complete treatment of my daughters. Today it is one of my own daughters reacted after several days of nearly all of reaction cancelled -walking, sitting, swallowing, sleep ... All of that as a consequence of the infection that ended ten days ago. It happened the second time, and I just sat there, cried. The first time it happened I was freaking out, running to the emergency, and they send me home because didnt find anything. This time I knew I was alone and that only I can hope for. I know how you feel ...ReplyDelete
Prayers for your daughters and especially for your mothers heart❤️ thank you for following our storyReplyDelete