It has been a long time since my last post, I apologize.
There has been a lot going on, so trying to find some time to update our blog,
after Charlotte has fell asleep, is hard to come by. Before I update you guys on the latest news,
I guess I should finish out our visit to Memphis and Le Bonheur. I think I left
off somewhere……where we had just pulled into town and could see the hospital
from our car.
Our 1st stop in town is to check into our room at
the FedEx Family House. Ahead of our visit, I went online and scoped this place
out, it looked really nice but I still wasn’t sure what to expect. Is this
going to be like a bed and breakfast, or a hotel? What all will they provide us
in our rooms? Is this going to be camp style where we have to bring all of our
own towels and sheets, or is everything down to the shampoo and soap provided?
I just didn’t know what to expect. The photos of this place were beautiful and
I can tell you that after being there, the photos don’t do this place any
justice. The FedEx house is ran on donations and is free to all families who
have children that are being treated at Le Bonheur. The FedEx house is
beautiful! It looks like a relaxing mansion in a sea of busy city streets,
ambulances, and hospitals. There is an immaculate back patio with green grass
for kids to play, grills, and picnic tables. When we were first booking our
trip, I almost elected not to stay at the FedEx house. Case and I have good
jobs and have the means to pay for a hotel room, I didn’t want to take away a
room from a family that was truly in need. After staying at the FedEx house,
and our experience at Le Bonheur, I am so glad that we did stay. It was an
incredible burden off of our shoulders knowing that we had a comfortable “home
like” atmosphere to hang our hat, away from a hospital room. While Case and I
can finically afford our own room, having everything already arranged, and
having the FedEx house worry about our room (instead of a for profit hotel that
is looking to get us in and out as quickly as possible) allowed us to focus
more on Charlotte and less on incidentals. Not only is the FedEx house a free
place to stay, they occasionally have local restaurants and business sponsor
meals for the families staying at the house. There is a kitchen area and a
STOCKED pantry with snacks that are available any time, day or night. We also
had free hospital transportation, 24/7 service. This was a blessing when our
first night stay we had to get up at 4am the next morning to check in at the
hospital. Free washers and dryers. Those came in handy after Charlotte decided
to redecorate her PJ’s and Pack n’ play sheets! We met other families going
through similar situations as ours. The staff at the house was amazing and
allowed us to stay a few more nights so I could recover from food poisoning. They
gave Charlotte a new toy every time they saw her in the hallway.
Our 1st night in our room was very nice. It was
like staying in an expensive hotel room. Modern décor, and every amenity you
can imagine. We checked in at 2pm on
Sunday. We then went and ate dinner at the Famous Gus’s Fried Chicken in
Memphis. Gus’s was very good. Their fried chicken was EXACTLY like my great-grandmother’s
who’s fried chicken I hadn’t eaten since I was about 7 years old. The Chicken was
great, the side dishes were only fair. The atmosphere was eclectic. I would
visit them again.
We had to be at Le Bonheur to check in at 5am Monday
morning. Our 7mo old baby is sleeping through the night like a champ, so we
weren’t sure what to expect, with getting her and ourselves ready for several
days in ANOTHER hospital. We are hopeful, and in one way excited and relieved
to be here, but we are less than thrilled about the idea of spending more
nights in those metal hard framed hospital cribs. I have come to really hate
those hospital cribs, they seem so….institutional. They look like something out
of a creepy 1950’s children’s lobotomy hospital. Today’s modern hospital beds
have foot petal controls to adjust the height and tilt of hospital beds. They
are made of plastic and are loaded with electronics. Baby hospital cribs are
NOTHING like adult beds. Baby hospital cribs are literally metal cages. It is
miserable trying to keep a drugged baby from falling over and banging their
head on the hard metal bars. Why is there not a better solution?!? I have
digressed…….back to my story…..
So we arrive at bottom floor at the hospital, and the
security officer directs us to the hospital admissions. We assume we are the
only people checking in, but really, we were just early. I go back into an
office, leaving Case and C in the waiting room. I pay our copays and give them
all of our information. When I come back out, the waiting room is FILLED with
other families and children. I hate to say that while C was the youngest kid
being checked in that day, she seemed to be one of the most capable. Remember,
she is only 7 mo old. The kids waiting to be checked in were from all over the
US, mostly from the south and Midwest. While there were a small handful of kids
that appeared normal, most of the kids that were being checked in had OBVIOUS disabilities.
I start to freak out a bit. My daughter is the youngest baby here; I am looking at these kids in wheelchairs staring
off at the ceiling and not responding to their parents requests for attention,
is this what my child is destined for? Am I looking directly at my family’s
future in about 8 years? Is this what happens with kids with seizures? I tense
up and become nervous. Another little girl comes in with her family. The
parents are about the same age as Case and I, but their daughter is older than
C. She is the only kid that morning that is close to C’s age, we later find out
that she is just a little older than 2. I am a little relieved, she was a
precious little girl, and C was enamored with her.
C is the first kid in the first group called back to escort
us to our rooms for the next 5 days. Le Bonheur wastes no time in getting stuff
done. No sooner than we were directed to our hospital room, it was time for C’s
MRI. She had an MRI done at HSV, but not one following “Epilepsy Protocol”.
Since I had already went through the MRI experience with C before, I knew
exactly what to expect. I was now in familiar territory and was beginging to
relax a bit. All the children younger than about 5 get their MRI’s performed
first since they have to be put under general anstesia to keep them still,
which means they have to be fasting. Our last MRI experience was FAR from fun.
In HSV, we were not first in line for an MRI, despite C being only 6mo old and
having to fast. It was nearly 11am before Huntsville Hospital got my baby into
the MRI. She was irate and starving. This was NOT the case at Le Bonheur. We
were #1 in line. Sticking a baby with an IV is never fun, but after 3 other
hospitals, I am nearly used to having to hold C down to get stuck. It isn’t
fun, I am just used to it. Once the IV’s are going, they let me carry C back to
the MRI. I walk her into a dark room with this big canister looking thing. The
staff working the MRI tell me to hold on to C tight, she is going to go limp
really fast and when she does, set her on the table. They gave her Profuol
(sp?) however you spell it….the same stuff Michael Jackson was taking to help
him sleep. That isn’t the most comforting idea to a mom, especially since it
hasn’t been long since his passing. The MRI is suppose to take about 45mins, so
Case and I go to the Café to eat breakfast. We are there about 10mins when the
little 2 year old girl’s parents walk in, following directly in our footsteps.
While C was in her MRI, she was getting prepped for hers. We eat, and go
directly back to our MRI waiting room. I am tense. A little while later, the
parents of the little girl walk in behind us. We are the only 2 couples in the
waiting room. We start chatting, we have made our first set of new friends,
their daughter is Mila. An hour passes and I start to get restless. I thought
this thing was only going to be 45mins. About that time, Mila’s parents get
called back to come greet their daughter. WAIT, C was ahead of her, where is my
baby?!?! My momma bear comes out and I
start trucking it back into the MRI prep area to get some information. As I am
walking back, I see C’s nurse in the hallway and they escort me to her recovery
room . C is stoned but happy to see us and wants to be held. We later find out
that her MRI was normal. Good news is always good.
In an effort to make a VERY long story short, I will cut out
a few details. After our MRI we go back to our room and its time to get C
hooked up to the EEG machine. She will be “tethered” to this machine which is
monitoring her brain activity, as well as 24/7 video monitoring; for the rest
of our stay. We have no clue how long we are going to be here. It could be as
short as 3 days, or as long as 7. I am with C the entire visit. Case stays with
me all day and helps me out. Once she goes to sleep for the night, he goes back
to the FedEx house and I stay in her room, being videoed and watched the entire
time. There are things to help pass time. Our room is right beside of the “playroom”. When C isn’t tethered to her EEG in her hospital
room, we are tethered in the playroom. We can’t leave these 2 rooms. Over the
next 5 days, the playroom becomes the new hangout for parents and kids trying
to burn off energy. There are toys for all ages, but they are a little lacking
in toys for C’s age. The older kids are in hog heaven with stacks of video
games and gaming systems. It takes us all of about 8 hours to get over the “don’t
let the baby crawl on the hospital floor, its gross” rule that I have. We
watched a lot of cartoons. Despite being out of town guests, we also had lots
of visitors. The hospital Chaplin would check in with us every other day or so,
and the nurses would come in our room every few hours with a NEW TOY! Yes….a
new toy like every 4 hours. Way cool! C got her first baby doll from a sweet
nurse who heard her crying her eyes out while we were trying to get all of the
EEG sensors glued to her head. For any normal kid/adult, having to sit still
and let them glue some sensors to your head is no big deal. To a baby, this is
the end of our world. I would rather hold C down while they work an IV in her than
to have to hold her down as they glue 25 little sensors to her head. I am still
greatful for the wonderful EEG tech who was so sweet to us and didn’t get upset
that C was upset. She was understanding and persevered under the stress. It was
very stressful for ALL of us! Along with 24/7 EEG an video monitors, I am given
a “red button”. This is called an “event button”. If I think C is acting
strange, or having a seizure, I press the button. It alerts the staff to pay
closer attention to her EEG at that time, and it gets recorded and time stamped
for the Dr to review. Part of this epilepsy screening is to not only see what
is going on with the kids, but also to help “reset” the parents. Before C’s
seizures, (and even during her very first ones), she would be flopping in the
floor and we would be writing it off as normal behavior. Look, she is ok, she
stopped….eventually, I am sure she is fine. Now that we had several medical
emergencies where she had seizures that didn’t stop, our “normal” threshold has
TOTALLY changed. While we were at Le Bonheur, C had about 7 seizures. 2 of
those I caught with the “event button” and they literally looked like she was
just cold and shivered. I am now freaked out every time my kid shivers…..this
is totally different than I was before. This is the hardest part about these
seizures, and talking with other parents,with
similar children, they agree. How do you know what is normal anymore. Is
your kids behavior a result of their condition, their medication; or are they
willfully taking advantage of your ignorance and caution and acting out. This
is hardest…even as of today. What can be helped and what can’t. You don’t want
to punish your child for behaviors that they can’t do anything about, but you
don’t want to have unruly children that take advantage of their situation. I have a new appreciation for parents of Special
Needs children. I thought I knew what it was like to help care for Special kids
after helping my Grandmother and mom out with my Aunt who has Downs, but until
YOUR baby is the one with a special need, you have no idea. The other seizures
that we caught were provoked by a strobe light during our photosensitivity
test. C failed miserably, we have a trigger, we are oddly thrilled. Our entire
time at Le Bonheur, we have only ONE doctor. He is there for the entire week
and he knows C like the back of his own hand. He is AMAZING! We meet with him
daily, as our schedule permits, NOT HIS. Should we be napping or eating, he
waits ON US, and comes back when we are settled. This is a stark difference from
the other hospitals we have been in. Before, if you missed the Doctors rounds,
forget finding out what was going on with your child. You maybe waiting in your
room, hungry and tired , all day, just to see what the Doctor says. This is NOT
how our visit was at Le Bonheur. Dr. Fulton was amazing, and his kind spirit
and love for children is obvious in his work. On day 3, we had a diagnosis.
Benign Myoclonic Infantile Epilepsy. C
is “expected” to grow out of this, pending genetic testing. We have some other
genetic tests to go, but so far, the Doctor doesn’t expect anything unusual. We
are thrilled and he asks us when we would like to be discharged. “Wait” I said,
“you mean you are ASKING us WHEN we want to be discharged?” He said, “yes, You
can actually stay as long as you are comfortable. You are welcome to stay and keep hitting your
event button to learn what is and what isn’t normal behavior. I will review all
of your events to help you figure out what is normal for Charlotte and make you
more comfortable”. Despite the hard
plastic like, hot makeshift bed, I elect to stay another night. That night Case
left for his race, and my parents arrived about 1pm that next day. Since my mom
is 2nd in command for C (she watches her while I am at work), I
really wanted her to have the opportunity to meet C’s Dr and ask any questions
she might have. On day 4 we were discharged and we packed up all of our things,
said “Goodbye and Good Luck” to all of our new friends, and headed back to the
FedEx house to stay the night. After checking out, we went to Burger King. We
don’t know our way around Memphis well, and were hesitant to just “venture out”
with a young baby, so we just stuck with something that was reliable and close…..bad
decision. 12 hours later I wake up, heaving in the toilet in our room. I try to
be quite with a sleeping baby just on the other side of a wall, and my
exhausted parents who had JUST driven down the day before……are soundly
sleeping. I am sick, real sick. I try my best to suck it up, but by 9am, I was
losing fluids so fast, I was worried about dehydration. To shorten another long story, I will say
that I am so thankful for the FedEx house, allowing us to stay an extra night
while I recovered well enough to go home. I paid a visit to Baptist Medial Hospital
and got fluids and great care. By the next day, I wasn’t feeling 100% but I was
feeling well enough to not get sick in my own lap on the drive home. Hahahah.
We arrive home, unpack and update friends and family on our
visit. In my mind, Epilepsy is over. I have a diagnosis and we are taking meds,
we are done and I don’t have to worry
about this anymore until she is about 3 and we look at taking her off her meds.Right…….I
mean, we know what is going on, an we have medication……that’s it…..right…… Life
is good…..right…….hmmm I still have a lot to learn……..
I want to end this part by saying how much we appreciated
the hospitality of the FedEx house. It meant a lot to our family. I know the
people mentioned in this post will never read it, but I still want to extend
all of my gratitude to Le Bonheur for taking such immaculate care of my baby. I
can’t believe I even accepted some of the treatments from other hospitals. I
shouldn’t be pushed around and I do matter, I am this baby’s mom! I know her
better than anyone! Thank you guys for not getting too mad at me the night that
I fell asleep IN THE CRIB with Charlotte. Hahahah….The nurse woke me up, not
because it was a problem for me to sleep with C in her crib, but because they
couldn’t see her on the video monitors. Hahahahaha. I want to thank all of the volunteers that
helped too. We had so many toys by the time we left to come home, we weren’t
sure how we were going to pack them all. You guys were awesome and so sweet,
the toys really helped comfort my baby when everything else around her was
metal bars and institutional blankets. God leads us down paths for reasons……and
I am here. I don’t know why, but this is my location for now. I trust and
believe that I am at this point for a purpose and reason. Our future remains to
be seen. I am so thankful for being lead to Le Bonheur. When I look back at how
we got to this point, it was honestly the work of little angels in our path,
helping to work out and guide our way to what was best for us. Thank God Case
and I paid enough attention to listen.
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