Hospitalization.
Blood tests.
Skin biopsy.
EEG
MRI
CT scan ("you mean that donut thing that I put my head in?")
Seizures.
Words and phrases that should not be part of any child's vocabulary.
Words that are now part of Bailey's.
To the point that, one day after asking if a neighbor/friend could play, Bailey returned with the news that: "She just got back from the hospital," and without missing a beat, moved on to ask, "Can we see if so-and-so can play instead?" Because hospitalizations are just what we do.
Words that are now part of Bailey's.
To the point that, one day after asking if a neighbor/friend could play, Bailey returned with the news that: "She just got back from the hospital," and without missing a beat, moved on to ask, "Can we see if so-and-so can play instead?" Because hospitalizations are just what we do.
Many of you have followed our journey through sporadic Facebook posts and haphazard Instagram posts, but now that we've reached a place of (relative) stability, I thought I'd lay out the full story, all in one shot, for interested parties.
It started last October on a seemingly normal Sunday morning. Bailey had been complaining of a headache and stomachache the night before (and again in the morning), so we decided that she'd stay home from church with Brandon while Boston and I GoJek'd to and from IES South. I even took a picture of my purse sitting by Boston's motorcycle helmet under my chair at church with thoughts of a #jakcitylife Instagram post later that afternoon.
Little did I know...
Brandon watched Bailey have her first seizure and I will forever be indebted to our neighbors Bless and Erna who jumped into action to help my shirtless and shoeless husband get our baby girl to the nearest emergency room. And I know that God was looking out for us, seeing as though Bless just so happened to recruit a school driver to take her to a market that Sunday morning and he just so happened to still be in the parking lot with a car, ready and willing to drive our Bailey girl to safety. If that doesn't scream divine intervention, I don't know what does.
A month passed, and with each day we breathed a little easier, slowly progressing from a point where we were examining with microscopic precision each and every blink and twitch and misstep, to just jumping at every OTHER blink and twitch and misstep. We were making progress. We were in the 70%.
Just kidding.
In November, Bailey had a second seizure. On another Sunday morning, I returned from a morning run to find Bailey and Boston lounging on the couch watching cartoons. Bailey was - again - complaining of a stomachache and headache. Partway through my shower, Brandon rushed into the bathroom and shouted, "Get out now. It's happening." Wrapped in a towel, I held Bailey's hand as she lost control of her head and stopped responding to requests to squeeze my hand. And that look in her eyes. She wasn't there. And there wasn't anything I could do to bring her back.
Thanks to (Father) Abraham, Brandon again got her to the emergency room. Boston and I followed on an ojek once I was decent and had grabbed a shirt and shoes for Brandon (have I mentioned that he hates wearing clothes?). After Boston and I arrived, Bailey proceeded to have a second seizure (this time actually convulsing on the bed). Mr Abraham quickly distracted Boston with some coloring. And the seizure; I can't describe it. I just can't...
Another ambulance ride. Another emergency room. Another hospital. (And Babs McGee had another sleepover with Auntie Gretchen and Uncle Glenn...we couldn't ask for better friends). This time we swapped the CT scan for an MRI and repeated the EEG. The MRI was normal, but the EEG showed seizure activity.
She was diagnosed with epilepsy.
Our baby.
She has epilepsy.
She's on daily medication - three times a day - to keep her brain functioning in a normal way.
Almost immediately upon her diagnosis, we were urged to seek a second opinion. Indonesia doesn't have the greatest reputation in terms of healthcare, and we are short plane rides away from countries that do (i.e. Singapore and Thailand). We opted to go to Thailand and scheduled an appointment with a pediatric neurologist at Bumrungrad International Hospital for early January, while we were still on holiday from school.
In order to cut costs and spare Boston the agony of waiting around a hospital while Bailey had her appointment, we decided that I would take Bailey on a solo trip to Thailand. It was nerve racking, traveling alone to a new city, but we made it.
The doctor reviewed all of the test results that I brought with me (yes, I packed EEGs, MRIs and CT scans in my carry-on!) and confirmed the epilepsy diagnosis. But as we were talking through her medical history, it came up that about three years ago, she began to develop dark patches on her skin. We had seen dermatologists (and even sought a second opinion) in California when her skin first started changing and were assured that the spots were nothing serious. But for the neurologist in Thailand, the dark patches were a red-flag. He said that the skin spots could be a sign of lupus. And the lupus could be causing the seizures.
You know, because epilepsy isn't enough. How about lupus with a side of epilepsy.
He scheduled appointments with a dermatologist and Bailey underwent a skin biopsy to test her darkened skin for lupus (and other skin disorders). And then began the waiting. We were told 3 days for the skin test that was sent to pathology and 10 days for the lupus test. It was two weeks until we heard about about either.
After a lot of back and forth with the dermatologist to decode the report that we received, we are breathing a little easier. No cancer. No lupus. No vasculitis. They still recommend that we follow up with a rheumatologist to determine exactly what IS going on with her skin. But that isn't an urgent something that we need to address right away.
And that's where we are.
Bailey has epilepsy.
It's not being triggered by lupus.
She will be on medication until she can go two years without a seizure (and then we'll begin to wean her off the meds).
We're at 54 days.
And counting.
I'll spare you the play-by-play of the next few days, as we went from the emergency room at the local clinic, to the emergency room at a Rumah Sakit Bintaro (recommended because they had a pediatric neurologist), to the high-care unit, and finally to a private room. By the time we checked out of the hospital, she'd had blood drawn, CT scan, EEG and countless vital checks from countless nurses. The EEG and CT scan both came back normal and we were told that up to 70% of childhood seizures are inexplicable, and that 70% of the time, they do not reoccur. Not the best numbers, but better than 50/50.
A month passed, and with each day we breathed a little easier, slowly progressing from a point where we were examining with microscopic precision each and every blink and twitch and misstep, to just jumping at every OTHER blink and twitch and misstep. We were making progress. We were in the 70%.
Just kidding.
In November, Bailey had a second seizure. On another Sunday morning, I returned from a morning run to find Bailey and Boston lounging on the couch watching cartoons. Bailey was - again - complaining of a stomachache and headache. Partway through my shower, Brandon rushed into the bathroom and shouted, "Get out now. It's happening." Wrapped in a towel, I held Bailey's hand as she lost control of her head and stopped responding to requests to squeeze my hand. And that look in her eyes. She wasn't there. And there wasn't anything I could do to bring her back.
Thanks to (Father) Abraham, Brandon again got her to the emergency room. Boston and I followed on an ojek once I was decent and had grabbed a shirt and shoes for Brandon (have I mentioned that he hates wearing clothes?). After Boston and I arrived, Bailey proceeded to have a second seizure (this time actually convulsing on the bed). Mr Abraham quickly distracted Boston with some coloring. And the seizure; I can't describe it. I just can't...
Another ambulance ride. Another emergency room. Another hospital. (And Babs McGee had another sleepover with Auntie Gretchen and Uncle Glenn...we couldn't ask for better friends). This time we swapped the CT scan for an MRI and repeated the EEG. The MRI was normal, but the EEG showed seizure activity.
She was diagnosed with epilepsy.
Our baby.
She has epilepsy.
She's on daily medication - three times a day - to keep her brain functioning in a normal way.
Almost immediately upon her diagnosis, we were urged to seek a second opinion. Indonesia doesn't have the greatest reputation in terms of healthcare, and we are short plane rides away from countries that do (i.e. Singapore and Thailand). We opted to go to Thailand and scheduled an appointment with a pediatric neurologist at Bumrungrad International Hospital for early January, while we were still on holiday from school.
In order to cut costs and spare Boston the agony of waiting around a hospital while Bailey had her appointment, we decided that I would take Bailey on a solo trip to Thailand. It was nerve racking, traveling alone to a new city, but we made it.
The doctor reviewed all of the test results that I brought with me (yes, I packed EEGs, MRIs and CT scans in my carry-on!) and confirmed the epilepsy diagnosis. But as we were talking through her medical history, it came up that about three years ago, she began to develop dark patches on her skin. We had seen dermatologists (and even sought a second opinion) in California when her skin first started changing and were assured that the spots were nothing serious. But for the neurologist in Thailand, the dark patches were a red-flag. He said that the skin spots could be a sign of lupus. And the lupus could be causing the seizures.
You know, because epilepsy isn't enough. How about lupus with a side of epilepsy.
He scheduled appointments with a dermatologist and Bailey underwent a skin biopsy to test her darkened skin for lupus (and other skin disorders). And then began the waiting. We were told 3 days for the skin test that was sent to pathology and 10 days for the lupus test. It was two weeks until we heard about about either.
After a lot of back and forth with the dermatologist to decode the report that we received, we are breathing a little easier. No cancer. No lupus. No vasculitis. They still recommend that we follow up with a rheumatologist to determine exactly what IS going on with her skin. But that isn't an urgent something that we need to address right away.
And that's where we are.
Bailey has epilepsy.
It's not being triggered by lupus.
She will be on medication until she can go two years without a seizure (and then we'll begin to wean her off the meds).
We're at 54 days.
And counting.
Thank you for sharing Baileys recent joinery with us. I know this must be hard as parents. I went through something similar with Angalena when she was little with seizures and it was aweful. Our prayers are with you daily and we send our love.
ReplyDeleteSara Moya