In the days following the medical team’s declaration that my
daughter, Robyn, was brain-dead, I refused to leave her bedside because I
wanted to make sure she received the care of someone expected to live. I did not think the medical team at Primary
Children’s Hospital (PCH) would harm her, but at that point, I did believe they
would treat her like someone who was dying.
I have seen many cases of people declared brain-dead since Robyn, and I
often wonder about these cases and the care given after the declaration.
One of
the things I was grateful for in Robyn’s case was that the medical team at PCH,
although they did not believe she would live, never threatened to disconnect
her from life support. I appreciated the
neurosurgeon asking me, “Ms. Edwards what do you want me to do?” I asked for more time and he gave her another
week. It was in that week that she made
a small movement and it was evident she was not brain-dead. Although they informed me not to place much
hope into that because of the mass amount of damage to her brain from the
stroke, I took that as a sign that God was indeed bringing her back.
Robyn
was never expected to get out of bed, as a matter of fact, when she opened her
eyes for the first time, I was told not to expect any more than that. But I told them, I expected much more. I anticipated she would come out of the coma
because I was trusting God for that. I
was often told that she would have another stroke because of her condition, but
I refused to believe that too. When she finally regained consciousness, the
medical team was astounded, and there were many evaluations to establish her
baseline, where she was when she regained consciousness compared to where she
was before the stroke.
Robyn’s
brain had endured a mass about of trauma from the stroke. One of the first noticeable signs was when
she starting swearing. With a lot of
redirection from the nurses, therapists, family, her dad, and me, she regained
those filtering skills rather quickly.
The medical team also wanted to place
her on medications, which I was against.
I did not want anything to alter her mental state or control her
reactions. I believed this was something
she would need to learn to do again on her own.
After allowing them to try a couple of drugs, and seeing the affects, I
refused to allow them to give her anything that affected her mentally. I allowed the aspirin and the drug for the
spasticity in her muscles, but that was it.
Oh, and there was the antibiotics for the infections she contracted
while there. We were in the hospital for
five months.
After Robyn awakened from the coma,
I was told that she would need to be admitted to a long term care
facility. Yes, I rebuked that in the
name of Jesus too. I told the medical
team that Robyn was going home. If Robyn
had to go to a facility, that meant I had to go, and we had been away from home
too long. I was told by the medical team
that she would be too much to care for on my own. But there was a case manager in the meeting
that stated if I wanted to take her home, she would help me with the transition. So I had to be trained in preparation to
return home.
The most challenging situations were
the ones where I had to give in to something that I trusted God to
correct. For instance, when I was told
she would need a tracheotomy and feeding tube for life, I refused to accept
that. But because they believed this to
be fact, I had to be trained in the hospital in order to prepare to take her
home. Some days were truly
difficult. I often told God during the
training, “I don’t know why I am going through this but I am trusting you that
it is not for Robyn.”
When Robyn first began therapy in
the hospital, I remember one of the first goals was something like sitting up
on the side of the bed, without assistance, for five seconds. That sounds like a small amount of time, but
for someone who lost that ability it was a monumental moment when she was able
to achieve it. With the assistance of
the therapists at PCH and colonel the therapy dog, Robyn made great
strides.
By this time Robyn was breathing on
her own and it was obvious that the tracheotomy could be removed, but she was
still dependent on the feeding tube.
When the speech therapist informed Robyn of what she needed to do to eat
again, Robyn and I went to work on strengthening her muscles in her face and
her mouth. Within in a few weeks, the
speech therapist ordered a swallow study.
A few weeks later Robyn was eating again. I often tell Robyn that those scars are
battle scars and a reminder of where God brought her from.
Robyn spent several months in
intense therapy at PCH. I was grateful
that she was strong enough to endure their program. I am not advertising for Primary Children’s
Hospital, but the rehabilitation team there has to be one of the best in the
nation. Robyn went from a very active
13-year-old to not being able to move or hold her head up. The team of therapist at PCH, were great
motivators and they never set limits for her, and I believe they too believe in
miracles. They played a major role in
her successes.
When I left PCH, Robyn was feeding
herself with a fork. She had made major
strides, but had many more to achieve.
The nurses and therapists trained me on everything from giving her baths
to transferring her in and out of her wheelchair. I must tell you that when I left the
hospital, I informed God that I was not anticipating Robyn going home in a
wheelchair. I also informed him that I
had no idea how I was going to care for Robyn and her brothers, but I was
trusting he would get me through it.
While the challenges in the
hospital were great, the transition home and all that it entailed was
overwhelming. When I had to fill out
social security paperwork for Robyn, I thought I was gonna suffocate. This was not supposed to happen to her at
13-years-old. The day I had to return to
the school to get information for her return, I almost had a meltdown in the
hallway. When I saw the kids in the
hallway and postings of activities on the walls, a flood of memories came to my
mind. I muted the scream inside of
me. I headed for the nearest exit, ran
to the car, and I cried.
Robyn’s transition home also
affected her brothers. My mom stayed
with them the five months Robyn and I were in the hospital and another three
months after we returned home. She also
returned several times to take the pressure off of me. With Robyn’s schedule of school, therapy and
needing my assistance as a scribe in the evenings, there was little time for
much else. So this affected the boys,
mostly my youngest son. As a mother I
tried to balance the effects of Robyn’s condition on everyone, but there was no
way to really do that. When my oldest
son left for college, my youngest son felt the affect more than anyone.
Robyn was readmitted to PCH about a
year after the discharge from the five month stay. When I was told by a friend that water
therapy was really good for mobility issues, I changed Robyn’s physical
therapist to one that offered water therapy.
It was the water therapy that helped her to take steps again with her
left leg. After several months in water
therapy, I asked her rehabilitation doctor at PCH if she could help get Robyn
stable enough to walk. She had Robyn
readmitted for a month of intense therapy at PCH, and Robyn left there taking
steps on her own again.
The initial reentry to school went
well. It was when she transitioned to
high school that I found myself up against a new set of challenges. To make it short, I will just say that most
schools are not prepared to educate a child with a traumatic brain injury. So there is a tendency to box them in, but I
expected and refused to accept anything less than an education for Robyn.
After high school, Robyn enrolled
in a brain injury program at a college in Southern California. This too proved challenging, but she made it
through. Robyn enrolled in an academic
program at Irvine Valley College in August of this year (2014). I imagine this too will be a challenge, but
she has overcome so many I expect that she will conquer it too.
When I read about other families in
our situation, I can only say what a neurologist at Primary Children’s Hospital
said to me before we moved away, “I can never tell another parent who has a
child with a brain injury as severe as Robyn’s that their child will live, but
I can tell them of one who did.”
Checkout my website for information
about my book, “God’s Miracle Among Corruption in Idaho” and a PowerPoint
presentation of Robyn’s journey (www.veverlymyers.com). Robyn’s massive stroke was caused by a
preventable medical error due to the negligence of a doctor in Idaho Falls,
Idaho.
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