When we left Le Bonheur, we had a diagnosis and a plan.
Charlotte’s daily meds were increased and we got an increase in her emergency
medications. As far as I was concerned, now that we had a diagnosis and plans,
what was going to happen? My baby is healthy and happy and no more HOSPITALS! We
are done; we got what we came for. We go back for a follow up appt with Dr.
Fulton in the middle of May. All is well. We can now wash our hands of this “seizure”
business.
In less than 2 weeks (on April 23rd) from our
visit to Memphis, Charlotte had another tonic-clonic seizure. At this point we
have had so many of these seizures, I have already forgot the details about
this particular one. I don’t remember the time or circumstances of the seizure.
I do remember greeting the Ambulance and seeing our usual EMT staff. “Hey guys,
it’s us again” they are disappointed to see us. “Ah man, not again”. Yep, sorry
guys, but at least we have a plan now. Charlotte seized for about a half hour
before her second dose of Diastat stopped her seizure. Since we now have a
seizure plan in place, we no longer have to stay multiple nights at the
hospital doing medical tests. As soon as Charlotte wakes up from her seizure
and drinks some fluids, we are released. In less than 8 hours, we are back
home. I was disappointed she had another seizure, but relieved that just a call
to Dr. Fulton and we had increased her meds once more, along with a new
prescription for more Diastat.
After dozens of Neurologists told me that, “Nocturnal
seizures are possible, but very unlikely. You don’t have anything to worry
about.” I was still uneasy about night. I am no longer a betting girl on, “it
just rarely happens”, with Charlotte’s 1 in 500,000 chances of having her
seizure disorder to begin with. Dr.
Fulton totally understood and even suggested that Charlotte sleep with us in
our bed so we could be alerted to nocturnal seizures. Past about 5 months old,
Charlotte never could seem to “settle down” between Case and I, so she rarely
co-slept with us past 6mo old. She seemed to toss and turn and fight us all
night long. At 9mo old, most babies have settled down in their own cribs and
are out of mom and dad’s room; but Case and I were too paranoid of nocturnal
seizures to take Charlotte out of our room. While Charlotte didn’t sleep well
next to us, we still kept her in our room. At this point in time, Charlotte was
sleeping in her pack n’ play next to my side of the bed, I was too paranoid of nocturnal
seizure to put her in her own room in her crib. Then, on May 9th at
5:45am, one of my worst fears happened. Charlotte had a nocturnal seizure. We
normally don’t wake for another hour. Thank GOD for those 6th senses
that Mom’s obtain once you have a baby. At 5:30, Case’s alarm went off, but
none of us got up and out of bed. Even Charlotte continued sleeping. At 5:45am,
Charlotte let out a very breathy but short cry. It was just enough to wake me
up, but not enough to cause me alarm. I thought she was just starting to wake
and stir for the day, she will either settle back down and sleep a little longer
or get up and babble some before hollering at us to get her out. Sometimes I am
lazy and let her just play for about 20mins or so in her pack n’ play while I
work on waking up. On this particular
day, I notice that at 30 seconds after
her initial cry, I hear her just barely struggling to breathe in a very heavy
rhythmic pattern. This was a very specific rhythmic pattern that I am now very
familiar with. I realize that something isn’t right. Within the first 3 jerks
of her generalized tonic-clonic seizure, I went from asleep to wide awake and
sweeping her out of her pack n’ play and administering emergency meds. I wish I had this on video because my actions
were impressively super hero like; I had some serious lightning speed. I still
thank my guardian angles for keeping my ears and mind posted on baby monitoring
mode while the rest of my body slept. Thank God for that mom 6th
sense, otherwise it would have been about 6:30am before any of us knew she was
having a seizure. Had we not paid attention, we would have kept on sleeping and
she would have seized for at least an hour before anyone had woken up. That
would have been a SERIOUS EMERGENCY! By 6am the ambulance was at our house
again, this time, we had a new set of EMT staff that was not familiar with
Charlotte. It did not go nearly as smooth has earlier visits. 30mins later, as
we are pulling into HSV Ped. ER, her seizure stopped. Once the logistics of emergency
seizure procedures settled down, I was in total freak out mode. Nocturnal
seizures are possible and I just HAPPEN to not be totally dead to the world
asleep when she had one. Had her seizure been just one hour earlier, she could
have seized for hours before we were awake enough to know what was going on.
Blood work was taken to check her medication levels and the tending ER
physician came in to talk to us. She starts off with the usual questions, “did
she have a fever?”, “Is this your first seizure?”. To avoid the whole gamut of
follow on questions that I am now so familiar with, I start in just telling
her, “Charlotte has Benign Myoclonic Infantile Epilepsy, this is her 4th
seizure and we just got back from Le Bonheur about a month ago. Her tending
Neurologist is Dr. Fulton. There didn’t seem to be a trigger for this seizure,
other than her next medicine dose was supposed to be about an hour from the
time she had her seizure.” The tending ER physician is a little perturbed that
we don’t have a “local” Neurologist. It is far easier for our local ER to
contact a local Dr than to have to call another doctor, 2 states away for
records. She asks why we didn’t stay local and
I tell her that we really did like our local Neurologist, but when C had
her 2nd seizure, she was on vacation and we had to go to UAB. I also
told her that by the time we would have went to see our local Neurologist for a
follow up appointment from our VERY FIRST seizure back in FEBUARY (at this
time, it is May), we had already been to Memphis and had a diagnosis! It is no
offense to our local Dr, it is just that she is the ONLY one and so busy, she
really didn’t have time to take us on. The tending ER physician then tells us
that another Neurologist is in town (Dr. Bebin) and it might be a good idea
just to have a local Neurologist for future ER visits. I can see now where this
might be beneficial, so I get the newest Neurologist’s information and obtain a
referral from Charlotte’s pediatrician to see Dr. Bebin. In less than 6 hours,
Charlotte has recovered enough to show the ER physician that she is able to
drink fluids, and we are released.
2 seizures in less than a month, I am devastated. What is
wrong? Is her medication not working? What if this happens even earlier in the
morning when we are all in a deep sleep? I assumed everything was going to go
well once we left Memphis, what has happened? We can’t live our lives with
these medical emergency type seizures every 2 weeks. I will get fired from my
job! Our family literally can’t “live” like this! Will we ever have a normal
life? I really start to worry that we will never get to do things like a normal
family, like go on vacation. Is this our new normal for the next several years
until Charlotte “grows out of it”.
Case and I put our heads together and start working on safe
guards for the house. I realized that during this last seizure, I could barely
hear Charlotte’s labored breathing over the noise of the ceiling fan and air
conditioner in our bedroom. We make a bold move and decide to put Charlotte
back in her nursery, with the audio baby monitor, only because it is way louder
than our own ears. We crank the baby monitor up so loud; we can literally hear
her breath while she sleeps. From this moment on, I never sleep soundly again,
and neither does Case. Even today, nearly 3months later, we are exhausted
tired. Every time C coughs, rolls over,
sighs, babbles, or shortly cries out in her sleep; we wake up. The audio
monitor is great, but we quickly learn that we are so high strung from the last
incident, that we are giving ourselves far too many false alarms. Next, we buy
a security camera. BINGO! This thing is AMAZING. I can see exactly what is
going on in Charlotte’s room without even getting out of bed. The only bad
thing is that even on the lowest setting, the screen for the video monitor is
still very bright for me. I sleep best in a pitch black room. My comfort for a
dark room is a small concession to make for the reassurance of the video
monitor for Charlotte, so I adapt. A few weeks later we purchase an Emfit “Epilepsy
Monitor”. It is basically a sensor that is placed under her mattress that
monitors her movements. SUPPOSLY if her movements are repetitive and fast
enough, this thing is supposed to trigger an alarm, assuming we were not paying
enough attention to her usual initial quick cry before a tonic-clonic seizure. Since
Charlotte is technically underweight for this particular sensor, I am not
putting a lot of confidence in this thing, but another line of defense is
always nice. My night stand has now been coined, “Baby Command Center”. I start reading up on other families in
similar situations and quickly realize that we are not alone in our efforts. In a time when most parents are starting to
wean away from all of the baby monitors and worries of (SIDs) sudden infant
death, we can’t quite relax. SUDEP (Sudden Unexpected Death in Epilepsy) is a
real concern for Charlotte since her seizures do not stop without medical
intervention. I can’t tell you a single morning that I have woken up since February
when I have been confident that I would find my baby alive in her crib; the
exception being the mornings that she woke before me and was babbling or
crying. I may even be guilty of just lying in bed until she wakes, just to be
sure. Even a crying baby in the morning is a sweet welcome noise these days. A
number of mornings when Charlotte has slept past her usual morning waking time,
I have been a bundle of nerves going into her room to check on her. From what I
hear from other parents, this feeling will continue for the rest of my life. I
start to wonder how our future is going to be. 2 seizures a month, 1 a month,
how many? Will she ever get to spend the night at friends’ houses? Go to the
skating rink (flashing lights)? Dances (flashing lights)? I had signed her up
for swimming lessons right before her seizure, but they wouldn’t accept her
after her seizure. Will she ever get to enjoy swimming like other kids? Ride on
rides at the fair? Will boys want to date her if they know she has a seizure
disorder if she doesn’t out grow this? Is this something she is going to have
to consider when she wants to have her own children? At this point, Case and I
arrange our family dinner dates around how close we are to a hospital (somewhat
a joke, but with a serious twist), what about a vacation? The worry overwhelms
me sometimes……….I am new at this. I get lots of comments from friends and
family saying things like, “I don’t know how you do it”, or “I can’t imagine
what it is like”. I have been told that all this is a lot to take in, but one
thing you have to remember, I am a first time mom, so I don’t know any
different. To me, this is normal. The only child I know is Charlotte, so her
wants and needs are all I know about children. If you have read this far,
thanks, I hope you find us interesting; but please don’t feel sorry for us,
there is no reason. This is just our life. I have been told it is different
from most, but it is ours and to be honest we wouldn’t have it any other way.
It is our way. After 5 seizures (one unconfirmed by medical Dr’s), our family
has changed so much. From a failed induction, c-section, time in the NICU, 5
seizures, multiple ER visits and ambulance rides, MRI’s, UAB, and Memphis; our
family wouldn’t be the close loving family it is today without some of the
hardships we have faced. We are here for a reason, doing the best we can. We
hope for the best for our future, but we will work with what cards we are given.
I love my husband more today and I have ever loved him before. These events
have really given us the opportunity to show our true love and affection for
one another. I couldn’t have survived any of these events without Case. He is
an amazing Daddy to my little girl (who is a total Daddy’s girl) and a
wonderful husband to me. I can’t imagine life without him and I know that no
matter what our outcome is for Charlotte’s condition, he will be by our side.
Charlotte is one lucky little girl to have such a great daddy. J
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