SURGERY
Tuesday, April 10,
2012
How does a mother even attempt to sleep when her baby is
going through surgery bright and early in the morning? IMPOSSIBLE!
Part of me was giddy at the thought that all of Jayson’s problems could
be solved in the morning. This might be
the last that Jayson had to fight to breathe.
The other part of me was terrified for my little guy. I was looking up more information in the
early early morning hours about Jayson’s condition and the procedure he is
having done. I thought it might make me
feel more comfortable so that I might get some sleep, but it did not. It was a really warm night too. We opened the windows because Jayson was
sweating in his bassinet. I wanted to
make sure he got a good night’s sleep because he would need all of his energy
to recover from surgery. We were told to
be at the hospital by 6:30 AM. That meant we needed to leave at 5:30 AM. That meant we needed to be up at 4:00
AM. That’s just crazy! I started to doze off between 3:00 and 4:00
AM and then got up and began getting us ready.
I was a little sniffly that morning, and figured it was because we slept
with the windows cracked open. I started
getting Jayson awake and ready and flipped out!! He was coughing, sneezing and sounded so so
congested! This could NOT be
happening!!! They would not operate if he was sick! And if they tried, they may not find what
they need to find! And it could be much
harder for Jayson to recover! I
suctioned him and got a lot out. I bulb
syringed him and got even more out. And
even then snot was dripping down his face.
This was terrible and I was a train wreck. I blamed myself. I never should have had people over for the
blessing. I was nervous to, and I should
have gone with my mother’s intuition. I
should not have opened the windows! So
stupid of me!! How could I be so
cautious for weeks and blow it in one night?
I finished getting my stuffy baby ready to go and we headed out the
door, wondering whether or not they would operate.
We arrived at the outpatient surgery area of the hospital
and it sort of felt like a carnival.
There were a lot of people there, and kids were running around and
playing everywhere. The poor little
suckers didn’t know what was coming. I
was greeted by a volunteer usher who informed me I had to check in at a
kiosk. A kiosk??!!! See?
Carnival. I would have received a
vibrator to tell me when it was my turn, except they ran out. We kept Jayson out in the hallway and not in
the waiting room. I could not begin to
fathom the amount of germs brewing in the carnival room. They called Jayson’s name and I got
registered and got my admission bracelet.
I thought about asking for a bounce back pass, but thought it might not
be appropriate. We waited some more, and
then got called back. Jayson got his
vitals taken and then we changed him into his adorable hospital gown. He seriously is soooo cute! I talked to the nurse about my concern for
Jayson’s congestion, and how it just came on this morning. She listened to him and examined him, and
determined that he was well enough to proceed.
PHEW! I was still nervous, and
hoped he was strong enough to recover well.
We went to another room, which was just as full but not
nearly as chaotic, to wait for the doctor and anesthesiologist to see us. They each came and said a couple of words
that I can’t remember and asked us to follow them towards the operating
rooms. We carried Jayson and all of his
equipment until we met a set of double doors.
The anesthesiologist said this is where we part ways. My heart broke. This was the first time in Jayson’s entire
life I had left his side through something traumatic. I could not follow him into that operating
room and it killed me. I knew he would
look for me. I knew he would want me. I just hoped he would be out soon with the
gas and anesthesia. I kissed him and
cried. I watched the anesthesiologist
walk through those doors with the most precious person in the world to me
hoping he would realize how special my little one is, and praying he would
treat him with care and comfort him while I was away.
Mike and I sat on a nearby bench and just looked at one
another. I’m sure we were thinking
similar things. Suddenly I needed to
visit the bathroom, as I often did, and relieve my feelings of anxiety, sadness
and fear into the toilet. Why did I
never feel better? I was shaking, but
convinced myself to get up off of the bathroom floor so we could go to the waiting
room. We grabbed some breakfast and
waited in the waiting room for any sign of news. This room was also full, but had a much more
sullen mood to it. The phone at the
front desk rang often with news. I saw
the faces of parents who heard the procedure went well and they could go back to
see their child; I saw the faces of parents who heard there were complications
and it would be a while before they would have more news. I wondered which category of parents we would
fit into. After what seemed like a short
period of time, our ENT doctor came into to room. He explained that Jayson was recovering and
he did well. I let out a half of a sigh
of relief, and waited to let out the other half upon hearing the surgery had
been successful. The doctor explained he
did not see what he hoped to see with the Laryngomalasia. Where he expected to see excess flaps to
trim, they were normal sized. His airway
was slightly narrow, but close to normal sized.
He was frustrated to not see the problem. He woke Jayson partially and went down again
while Jayson was breathing and swallowing normally. That was when he noticed excess skin on the
epiglottis. It was folding over and
closing off his airway. He did some
conservative trimming and called it good.
I let out the rest of my sigh. It
was done. Jayson would get better. We found the problem. I wanted to see my boy.
The doc said we would get a call when Jayson was in the
recovery department and went on his way, and left us with pictures of the
inside of Jayson’s airway. I packed up
my computer and prepared to be called back.
I jumped up when the phone rang and they called Jayson’s name. I nearly ran to the room and my heart nearly
stopped when I saw my beautiful boy. He
looked terrible. He sounded awful. He was sleeping, but his breathing was
unbelievably loud. He had snot and dried
tears all over his face. My poor poor
baby. He had to have been so upset. He never cries, and I wasn’t there to comfort
him. How traumatizing. How terrible!
I didn’t dare touch him, but I stood incredibly close. His face and neck were so swollen I almost
didn’t recognize him. Both hands were
all bandaged up and I asked why. They
said a nurse let his i.v. get clogged and it had to be reset in the other
hand. Great. I just wanted to pick him up and snuggle him
and apologize. I wanted to tell him it
would be okay. The nurse gave him some
more pain killer and said he was really congested since surgery. They had already suctioned him a couple of
times. Poor baby.
After about 30 minutes, they said he was ready to go to a
room. We went to a hallway of
glass-enclosed rooms designed for observation and basic care after an
outpatient surgery. Mike met us there
and we both just stood and watched our sleepy little boy wondering how long he
was going to sound like a turbo jet every time he breathed. I started wiping off his face and requested
he get put on his high flow, certain that would help him breathe. The nurse had never heard of it. Really?
No, not CPAP. No, not a higher
flow of oxygen. High flow. She had to call the doctor to ask what it was. Wow. I
lost all confidence. I was going to
have to be Jayson’s expert, again. And I
was. A nurse-in-training was left in the
room with us while the other nurse left to go call the doctor to see what High
Flow was. An alarm started sounding on
the i.v. machine. I asked the tech why
it was making that sound. She said it
sometimes does that. Geez. I went to go hold Jayson’s hand when I saw
blood was traveling up Jayson’s i.v. and through the tubing. I told her there was a problem and she said she
didn’t know how to fix it. She went out
in the hall and just looked around, “attempting” to find someone to help. Finally, I stormed out and found our nurse
who came in and flushed the i.v. and fixed the problem. Wow again.
I wonder how it got clogged the first time. Poor baby.
My favorite respiratory therapist came and set up Jayson’s
High Flow system. He explained to the
nurse that I was an expert on this system and could manage any problems. If not, I could have him paged. Crazy when the parent becomes the expert in a
hospital. Over time, Jayson’s breathing
got quieter and quieter. His swelling
started to go down. He had some fussing
episodes and they treated his pain with Tylenol. Right after surgery?? Really??
Might as well just give him water.
I felt bad and just held and cuddled him as long as I could. He slept a lot. He was recovering and sleeping off the
anesthesia. For the most part,
everything went smoothly throughout the day and overnight. He got his last dose of swelling medication
before we left to go home the following morning. His breathing was a lot quieter now, and we
were looking forward to seeing the improvements!! We were so hopeful.
HOSPITAL VISIT #4
Thursday, April
12, 2012
Everything went smoothly once we got Jayson home from surgery. We gave him constant Tylenol. I just wanted to run it continuously in his
feeding tube. He was fussy and
uncomfortable, and occasionally demonstrated he was in pain. He slept well that night and didn’t really
wake during the night. I woke up several
times to check on him and to give him his antibiotic and Tylenol and he seemed
to be sleeping peacefully. At 7:00 AM I
heard his monitor go off. False alarm, I
thought. I sat up and opened my tired
eyes to see his heart rate levels flashing on the monitor. That hasn’t happened before. I saw it go from 70’s, to 60’s. 40’s, 30’s,
11. I just stared. 11.
For several seconds. I looked at
Jayson. He looked pale, but
peaceful. It seemed like he was
breathing, but it was dark. I was
tired. I didn’t know. I prayed he would move. I grabbed his shoulders and moved him from
side to side. He was so clammy and
sweaty. There was a pause, and then he
moved, grunted and stretched. His heart
rate jumped back up to the 70’s and then the 120’s. Phew.
I felt so grateful that he responded to my shaking this time. I never want to go through trying to wake my
baby again and having him be unresponsive.
I watched him closely for about an hour, got him some more milk in his
feeding pump, and rocked him for a while.
He was still so tired. And so was
I. I went back to sleep and decided I’ll
call some doctors later to report the incident.
For now, things seemed okay.
I got a phone call from the hospital at 11:00 AM asking how
Jayson was doing after surgery. I
reported the event, and the nurse on the phone seemed very concerned. She told me to call his doctor. Which one?
The pediatrician that doesn’t really know much about special kids? My ENT doctor? The Pulmonary Specialist who specializes in
sleep who has retired and moved to Texas?
Which one? She suggested my ENT
doc and the Pulmonary Specialist office.
I made my phone calls and left my messages. The ENT nurse called me back quickly. She asked me to relay the events of the
morning. She asked me a couple of
questions. She then sounded very worried
and said, “I thought at first there was no way; this had to have been a false
alarm. After talking to you, I’m fairly
confident it was not. I’m going to
report this to the doctor right away, and I feel like you should get him ready
to come to the hospital.” The ENT doctor
called me shortly after. I told him what
I told the nurse. He showed the same
concern and told me he would feel comfortable if I took him to the hospital to
be checked out. I told him I would think
about it and watch him close. I informed
him that the doctors didn’t seem to be too concerned when he quit breathing for
a couple of minutes and was being prepped for CPR. I didn’t expect them to be too concerned this
time. He told me to watch him close
then, and to think about having him checked.
I started packing a bag and getting Jayson’s things together. Grumpily.
I knew what would happen, and I didn’t want to go. The pulmonary nurse called me back and we did
the same run around. She talked to
another Pulmonary Specialist doctor and called me back. She ordered me to go the E.R. She said it was a legitimate occurrence and
she would inform the people in the E.R. department that I was on my way. Great.
Now I HAD to go. I was taking my
sweet time, knowing they would likely keep him overnight for monitoring in the
E.R. so I didn’t want to arrive too early.
I had him off of his monitor since it was day time and he was awake. For the heck of it, I hooked him up to his
monitor to see where his SATs were at.
Dang. Bad mom. His waking heart rate was below 100 and was
getting down into the 70’s. I started
crying. Sobbing really. I was so tired of being worried. When one thing starts to improve, another
problem pops up. I started packing
frantically and called a close friend to come help while I finished getting
ready to go to the hospital. I called
Mike and work and he left early to meet us at the hospital.
We got checked in to the E.R. and a Physician’s Assistant
came to examine him. We relayed the
events of the morning to him and his eyes were really big. He scooted his stool close to me and stared
me right in my eyes. “Why did you not
bring him in right when this happened at 7:00 AM?” he asked with a critical
stare. I hostiley said that doctors
haven’t been too concerned about my child at this hospital when worse events
had occurred, so I didn’t think I needed to bring him in once he responded and
was fine. I told him that Jayson’s
heart rate had been lower since surgery, but was still in the low-normal range,
and I thought this was a bogus episode.
With urgency he said, “Listen closely.
Your child is NOT normal. Stop
looking at NORMAL ranges and signs for your son. He is a special case. If his heart rate gets into the 90’s, you
call a nurse. If it’s in the 80’s, you
get him here. Do you hear me? I am not a vulgar man, and when I hear you
tell me with a straight face that his heart rate was 11, I say HOLY SHIT! And I don’t swear. We begin CPR when a heart rate drops below
60. We use machines to resuscitate when
a heart rate drops below 40. 11 is darn
near dead.” I started tearing up. Why didn’t he just say it? I’m a terrible mother! I was wrong!
My motherly instincts were wrong!
And I nearly killed my child!
Great. It’s their fault for
entrusting his fragile life in my care at home.
The actual doctor popped in for a minute. She didn’t examine Jayson. She had one purpose. To make certain that I knew I was an awful
mother. She sat down and looked me in
the eyes and said, “Do you understand how bad this is? A heart rate below 60 is a CODE BLUE. Your child coded. If he were here, he would have been intubated
and resuscitated. Do you understand that?”
I cried and nodded my head. Got
it. I’m a piss-poor mother. I understand.
A cardiologist technician came in and took an EKG. His rhythm was normal, but his waking heart
rate was low- average of 92. The doctor
told us Jayson would be going to PICU.
They said he wouldn’t be allowed on the floor because he coded, and his
heart rate was at this moment too concerning to be put on the floor. Wow.
Our third trip to PICU.
We walked with the respiratory therapist and the nurse to
the PICU but had to leave him once again at the double doors. It was shift change, and the PICU closes to
parents for an hour. I just wanted to be
with my baby, but I guess it was also good to be alone with my thoughts. I was in disbelief this was even happening. I started calling family and updating
them. After about 45 minutes, a nurse
came and got us from the PICU waiting room and took us in to Jayson. He was pale and listless when we left
him. We walked into a near-private PICU
room with a window to find a half dozen people circled around him. Must be bad, I thought. Nope.
My son was kicking, smiling and giggling. The circle of nurses and doctors were being
entertained by my sweet boy. I let out a
sigh of relief and kissed him on the forehead.
The nurses and doctors in the PICU asked for the story, once again. A doctor asked why I brought him to the
hospital. He said, “You said he was pale
and sweaty, but after you woke him up he was fine, right? You weren’t concerned and didn’t bring him to
the hospital until later this afternoon, right?
So why did you bring him in if he was doing fine?” Really?
One minute I’m a horrible mother, now I’m just a psycho overly-cautious
one. Wow. The team of people explained to me that
Jayson was a special case. I heard this
one. He’s going to do some weird things
sometimes, so I need to establish a normal for Jayson. Blah blah.
Use motherly instincts. Blah blah. I know.
That’s why I didn’t call until late morning. That’s why I called doctors instead of
bringing him in. So why did I get an ear
full from E.R.? They said the E.R. docs
aren’t as familiar with special case kids.
Okay. Again, I’m on my own. I can’t depend on anyone here. At least my motherly instincts were not
wrong. I did not see a reason to freak
out, so I didn’t. That doesn’t make me a
bad mom. I just followed my
instincts. The PICU nurses and doctors
made fun of the E.R. docs for a few more minutes and questioned why he was even
sent to PICU. We were told we had the healthiest boy in the history of
PICU. Haha. That was nice to hear for a change. Within the hour, we were wheeled up to the
floor and into a private room.
A doctor came and met with us. We retold our story and she came up with a
plan. They ran virus tests in the E.R.
and we were waiting for results. She
wanted to run another urinary tract infection test to rule it out. Really?? He wasn’t running a fever. She insisted it was critical to rule it
out. He had to have yet another
catheter. Poor poor baby. She also ordered a catscan to see if we’re
missing anything in the brain. He head
is oddly shaped and we wanted to be sure his plates weren’t fusing. This concern had been brought up many times,
so I agreed to it.
Friday, April 12,
2012
We went into radiology at 12:30 AM. Jayson hated the big machine, but I sang
lullabies to him American Idol style so they were loud enough for him to
hear. I thought he did fairly well. We went back to our room and tried to get
some sleep. I met the team of doctors in
the morning and was informed half of the virus tests were clear, the urinalysis
was clear, and the CT scan was mostly normal.
He has some flattening on one side of his head, but nothing too
concerning. They explained the episode
could have happened by him refluxing and it hitting the vagus nerve which would
send the body into shock. Their plan was
to observe him one more day and night and see if he has any other
episodes. Sounds good.
Mike was with back with me that morning. We made the most of our day and spent time
together as a family… in the hospital… as we often times do. I looked up info about their possible
explanation, and it made sense. It was
common for babies with bad reflux to have these episodes with the vagus nerve
and code for a brief moment. Everything
went well and looked normal at the hospital, so we were on our way home the
following day.
Saturday, April
21, 2012
Best. Day. Ever. I
needed today. I woke up today with a fresh perspective. Instead of hating my life, my situation, my
house, etc. I woke up loving
everything. I loved my bedroom, my living
room, my kitchen, my baby and my life. I
reorganized the master bedroom closet while Jayson took a nap and played on my
bed. I then took Jayson’s 4 month
pictures. He was so smiley and
cute. I packed up Jayson, his feeding
pump, his oxygen, and the puppy and we went for a walk in the stroller. It was such a beautiful day today! The weather was perfect, and the temperature
was in the 80’s. I didn’t really know
where we were going to walk to, but once I got started I thought we would go
visit a couple of neighbors! I felt
normal. I felt like a typical little
mommy walking her sweet baby and puppy and showing him off to the
neighbors. It was the best feeling in
the world!! And it was so nice to be out
of the house! We visited the Faulkners
and met their new little bunny. We
visited the Beveridges and I talked with Kortney, Joselyn and Jamie for quite a
while. I tried to stop by and see
Michelle, but she wasn’t home. We then
stopped by the Tomlinsons to thank Dorothy for making the rice packs to help
with little Jayson’s belly aches. We
were all tired and worn out by the time we got home, and the baby and I even
turned a little pink from the sun. We
were out for about two hours!! Mike came
home shortly after and I made us some delicious burgers and pasta salad. I spent the rest of the day cuddling my
little guy and watching him do cute things.
He is so close to rolling over!!
And he laughed and smiled at nearly everything. He loves his little stuffed, crinkle elephant
and hugs him. It is so cute. Today was a good day. Every day I’m thankful for the life I live,
and today I enjoyed every minute of it.
Sunday, April 22,
2012
Today was my first day back to church. I just went for sacrament meeting, and it
wasn’t what I thought it would be. This
week has been monumental. I went to work
for 4 hours and I went to church. It
felt good to feel normal and do normal life things. But the truth is, I’m not normal. My life is not normal. I am different and right now distraction
hurts. Walking out those doors does not
change the reality—my son is fighting for his life every minute. Things might be going well enough to have me
leave the house for a couple of hours, but in all honesty we could end up in
the hospital again tonight. There are so
many thoughts and emotions running through my head right now, and quite
honestly, it’s seems easier to stay in the house with the walls closing in
around me.
I feel guilty. How
can I even think about doing something normal when my little one is at home using
every ounce of energy he has to breathe and survive. How can I have artificial conversations with
people knowing my little one is not well.
“How are you doing?” “That flower
garden is looking beautiful in front of your home.” “Oh, you cut down your tree.” I feel like I need to dedicate every minute,
every thought, every conversation to my struggling son. Not only do I feel I need to, I do. I think and talk of little else.
I’m not like everyone else, and no offense, everyone else
just irritates me. I looked around at
the principals and church goers around me this week and felt like I didn’t
belong. I’m changed. I’m different. I don’t fit in. I fit in at the hospital with the groups of
parents mourning or talking about the milestones their children accomplished
while at the hospital. That’s where I
feel comfortable. I cannot tolerate
conversations among principals about how the books they ordered in Spanish are
on back order, or about how they are experiencing anxiety while using our
website. Really? I don’t give a damn. Honestly, I don’t. A few months ago, their concerns would have
consumed my life. But right now it’s all
so trivial. Figure it out. These are things that can be fixed and
controlled. I don’t know that my little
boy can be fixed. Church was difficult
today. I saw parents getting irritated
with their children for not being reverent.
I would just love to bring my child to church. That may not happen for months or years, if
at all. I looked around and saw people
who were focused and consumed on their trivial day to day lives. I remembered when I was worried about whether
my legs were shaved for church, whether we got a bench or a metal chair at
church, if my hair was done, and if I got a chance to visit with some of my favorite
friends and neighbors. I found myself
partially missing that girl who was so care free and positive. She’s gone.
I’m a new person; I’m a better person.
I’m more serious and mature. I’m
more confident and able. Before I merely
wanted to conquer the world, and now I know I could if I determined that was
what I wanted to do. I’m skeptical and
critical. I no longer trust that
everyone has the best intentions. I know
that sometimes things don’t work out.
And I find myself getting frustrated with people who are like I
was. It seems easier to go back to my
world of medical equipment and mommy support groups.
When I go out, I realize the world is still going
round. How is this possible when my baby
is not well? My world is not going
around. It stopped. I don’t know what date it is. I only know what day of the week it is
because I have several doctors appointments each week. I hate that life is going on around me,
passing me by. I see people having
babies, people getting married, businesses opening and others closing. How can this happen when my world has
stopped?
April 27, 2012
I always said I could do this. I may hate it. It may be hard. But I can do this. I’ve always thought I can do anything but a
life-threatening disability, a heart condition, or seizures. Well, I’m learning I don’t really get to
choose. I’m also learning that Jayson’s
condition is very complex and changing.
I’m starting to think that everything isn’t an isolated case. After our ENT appointment last week, we’ve
realized that surgery doesn’t seem to be really helping. Many things are even worse. Now, Jayson is displaying seizure-like
activity. It freaks me out and scares me
to death.
Jayson may have been having little seizures for a while
now. Ever since he got his NJ tube placed,
occasionally he wakes up in the middle of the night with the “wiggles”. He’s super squirmy. He’s half asleep, half awake, and just
squirms and wiggles. We’ve always
swaddled him, and it’s even more important now to keep him from grabbing his
tubes at night. The wiggling and
squirming got worse after surgery. I was
waking up many times at night to find him restless. I’ve tried unswaddling, swaddling tighter,
adjust the temperature, warming his milk up even warmer, rubbing his back and
belly, etc. Nothing seemed to help, but
I wasn’t too concerned. Jayson got
another cold and was struggling to breath last night while Mike was out of time
at a convention. My sister stayed with
me and we stayed up most of the night watching him. I was determined to stay up all night because
I was worried. At about 4:00AM, he
started squirming. Since I was all
bright eyed and bushy tailed, I decided to turn on the light and just sit and
watch what he’s doing. I started
noticing jerk-like motions and squinting of his eyes and scrunching of his
forehead. I then unswaddled him so I
could better see what he was doing. Oh.
No. There were major jerk-like motions with
his arms and legs. He’d wiggle, wiggle,
wiggle, JERK, JERK. They looked like
spasms. I then remembered one of our
little roommates in the hospital and her infantile spasms, which were a bad
form of seizures. His motions resembled
hers. I held him to see if I could calm
him and to see what they felt like.
There was no calming him, nor could I really wake him out of this half
asleep half awake daze. And he felt like
electrical currents were shooting through his body. He was definitely not controlling these
spams. I was sick. I timed them and watched his vitals. He had clusters and the entire episode lasted
for 45 minutes. I was scared. He finally calmed and I laid him back in his
crib. I got a couple of hours of sleep
before he woke me at 7:00AM with the same spasms. I woke my sister up and had her video tape
his spasms.
I wasn’t quite sure
what I should do. As soon as doctor’s
offices opened, I started calling and leaving messages. I called my NICU nurse friend. She seemed concerned that they were
seizures. I started feeling my bad
feeling; the one I feel when it’s time to go to the hospital. I slowly started repacking our hospital bag
and waited for phone calls back from doctors to decide what I should do. After I left the room to grab something, I
returned to find Jayson’s feeding tube spit out the end and it had drenched my
bed with milk. Yuck! I also noticed his
tube was full of green fluid. What
the??? I called my nurse friend again,
and she feared the tube was no longer in the intestines, but in the
stomach. I feared the same thing. His tube had come out quite a bit that
morning, and I put it back down and taped it.
I had a feeling it was no longer in place. Well, at that point, I had no choice. He had to go to the hospital to have his tube
replaced anyway. So here we go!
I checked in at the E.R. and asked if I had to go through
the E.R. to get a tube replaced. They
asked if he was sick. I said he had a
little cold. The receptionist said he had
to go through the E.R. then. Okay, if we’re
going to spend the time and pay the $200 copay, we’re going to have these
spasms looked at too!
This E.R. visit was a JOKE.
The physicians assistant spent most of the time with us and she was rude. She had an attitude of, “Why are you here?” I showed her my videos and she didn’t feel
they were seizures. She called in a
neurologist, who would only look at a portion of my video out in the hall. The neurologist then popped her head in and
said they were not seizures but Myoclonic jerks, and no follow up was
needed. Awesome. Thanks for your time.
I was glad no one felt they were seizures. But, I couldn’t deny what I was feeling. The P.A. also didn’t think the tube was out
of place. She said it is common to get
green bile out of the intestines. Then why hasn’t it happened before? Then why were other people concerned about
it? We x-rayed it, and sure enough, it’s
BARELY still in the intestines. I asked
them to replace it since it was giving me so much trouble. No.
They wouldn’t. Okay, I could tell
we were done here. I wasn’t going to get
any of the help I wanted, so we left.
Without answers, we left.
I went home and researched Myoclonic Jerks. Yeah, that diagnosis could fit. But, the only way to diagnose it is through
an EEG. They nearly exactly resemble
seizures. We didn’t do an EEG. I didn’t feel good about it. And they were morphing. Jayson was no sporadically tightening and
stiffening up his legs uncontrollably, while awake. He also started having episodes, while
awake. I had a feeling of impending
doom, and I knew things were going to get bad.
Very bad.
May 3, 2012
I want so badly for this to be a memory. I want even more to forget the memories and
the horror I’ve been through. I’m
getting quite the collection of memories that will forever give me nightmares. Over the past couple of days, Jayson 's seizure-like episodes have gotten worse.
Tonight was the worst one. No
mother should ever have to hold her baby while having a seizure. Never.
I feel helpless. There is nothing
I can do while my sweet, precious boy is kicking and flailing around, while his
head is bobbing back and forth, while his forehead is scowling and his eyes
shooting in opposite directions. And he
has started crying. They are hurting him
and there isn’t a dang thing I can do about it. So here I sat on my couch,
trying to comfort my baby through an hour long seizure-like episode… by myself…
with no explanation and no one to go to.
We called our close friends at midnight and asked them to
come give Jayson a blessing. I wanted
him healed. If doctors couldn’t do it, I
was going to depend on God to do it. I
couldn’t sleep with my baby in this state.
They came and Anthony Faulkner gave him a beautiful blessing. I had faith it would work. But then, Jayson started having a milder
episode while they were there. It lasted
30 minutes. He had many more that night
and Mike and I slept on the couch next to our little baby, with our hospital
bags packed, keeping watch. Mike had the
12:00-4:00AM shift, and I had the 4:00-7:00AM shift.
I had one more glimmer of hope. We have a doctor’s appointment in the morning
with the Special Care Pediatrician. He
only takes patients with 3 or more serious conditions and with 3 or more
hospital admissions. We were one of
those patients. I wanted him to be
Jayson’s savior. I wanted him to come to
our rescue and give us answers no one else could. We had heard he had done that for
others. I was praying he would do that
for us. In the meantime, I am going to
hold my baby, cry and pray.
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