Wednesday morning Michael has his
day off from labs so his school doesn’t start till 12:30. So he planned on
being home till 9 and then goes to school to study. At 8 o clock though Brock
had another seizure while he was playing on the floor with me, I was glad
Michael was home so he could see it. Being in medical school he could help me
describe it and he knew the right things to say, and also help me with it. I am
pretty sure he was glad to be home and not driving like a maniac trying to get
home. Michael talked him through it and I timed it and also stroked his legs,
and got a thermometer so that we could take his temperature. It was 90 seconds,
he was 98.7 degrees, and he came out of his lethargy after, in about 10 mins.
It acted a lot like the seizure the day before. He didn’t turn blue or purple
his mouth was open and he made a low gurgle again. I could defiantly tell he
was going to have a seizure he cried out and crawled on me and then went into
his seizure.
Michael held him but Brock just
cried after, he wanted to sleep so we laid him down. I tried calling his
pediatrician but it was an after hour clinic and we couldn’t get ahold of the
nurse. At 9, I called back and talked to the nurse. I really like Brocks doctors
and nurses. She was very concerned and she called back after talking to Dr.
Miller. Michael answered I was making an appointment with a Neurologist. They
just told us to go to the ER at Le Bonheur, that way we wouldn’t have to wait
for an EEG or MRI and we could get help today.
So after Brock woke up, we went to
the ER. It was about 10 am at this point. They got us in a room very fast.
However we just waited for an EEG until 3. They woke him up for every nap to
get his vitals and he was hooked up to a monitor so they beeped all day long.
We asked if they had any baby food for him but they didn’t have any. He didn’t
want to nurse because there was way too much going on and we honestly didn’t
have any privacy. At the end of February I had food poisoning so we ended up
having to give him some formula because I was so sick. I had a hard time
getting my milk supply back up so he has been taking 2 bottles a day for a
couple of weeks. I am honestly extremely grateful now because that’s all we had
for him. We bought him a banana at the cafeteria and he had some bites of our
lunch but he really needed more. I wish we were not in the ER so we could have
asked someone to bring us something. Michael wanted to run home but every time
the doctor came in he said it won’t be long we have his order in, also another
reason we didn’t think we could call someone in case we were not in the room.
But it was always a long time, a very long time.
I and Michael spent the whole day
trying to entertain him. We found anything we had to give him just to look at
for a couple minutes.
If we didn’t
he would find everything else to pull on!
I was getting really sick of putting
back on his leads. I wish he didn’t have to have them.
Finally asleep, he had horrible naps
in the ER, poor kid. And when he finally did sleep they would wake him up.
The EEG was a horrible experience
for him he HATED IT. First of all they swaddled him. He hates being swaddled.
the lady told us that he would respond so well to swaddle and was so sure that
if she had soft music playing he would fall asleep, then the glue and other
stuff was very stinky and he didn’t like it. It was also cold and strange and
he had to hold him down. They glued 26 electrodes to his head then placed gauze
around it. He was screaming mamma mama the whole time.
They wanted him to sleep for part of
it but he hates being swaddled so he wouldn’t. He was just freaking out.
Finally she said if you think he will do better unsaddled you can. Sure enough
he settled down and went to sleep. His legs where spread out almost off the bed
and his arms were up on his face.
She then she had to take it off.
That was just as stinky and not very fun. At least it was faster. She then
wiped his head with a wash cloth. And we left… He still stunk and was full of
glue.
After his EEG, that is exactly the
right face to have!
We went back in the ER and waited
for another hour or so. They put in an IV and drew some blood. He screamed
bloody murder, not that I blame him at all. His arms and wrists are too baby
chubby to find a vein so they had to do it in his foot. We held him down and he
just fought and fought and fought. This kid is so strong.
Afterwards they put a silly brace
on, that was huge!
He also hated it.
We found out we were waiting for a
room to open, and then we could go get him to sleep, but they needed a CT scan
first so Michael took him to do that. He fought and cried. We waited again he
really wanted to sleep I kept asking if we could let him sleep or if they were
just going to be waking him up soon. We didn’t get an answer. I was getting so
annoyed at this point. It was 6 by this time and we had been there since 10. We
watched people come in and out of all the other rooms. Complaining about how
long they were there all of 2 hours. I just felt so bad for Brock. He finally
fell asleep and an hour and a half later they came in to do vitals. They at
least tried to let him sleep as much as he could. This whole time in the ER we
couldn’t use our phones, we had to send texts at least 3 times before they
would send and we couldn’t get calls or make them, the call would just drop. We
had a room and after they did vitals they moved us up there. He of course woke
up as soon as he was moved and they put him in a plastic hospital basinet that
he was way too big for and his feet stuck out the side. When we got to the
floor they had to do vitals again. And he was really not having it. She tried
to wait till he was asleep but he would wake up. Finally they got it around 9.
Michael had to run home 2 times to
get stuff for me, and Brock. We needed the pump and it wasn’t all together so
we couldn’t use it. So he had to run back for a part. Needless to say we were
mentally and physically exhausted. They told us he couldn’t eat after 12 (for
his MRI) so I set my alarm for an hour because by the time I pumped and we got
settled it was almost 11. She also took his vitals at midnight thinking he
would be calm enough to do it again. Michael was now sick and he was running to
the bathroom all night. Brock was on monitors that beeped every hour or so and
the nurse had to keep coming in to check his vitals and his IV all night. Which
we found out was a good thing, he almost kicked his IV out even with the brace
on and he got tangled up in the cords all night so she came in and untangled
him all night.
Brock woke up at 6:30 starving. Of
course he hadn't eaten any solids the day before. We were told we got right in to the
MRI and they would come get us at 7:30. Michael was sick. And Brock was hooked
up to everything so all I could do was hold him at his crib. The nurse came
in and took off his leads and let me just push around his IV stand and that was much
better. Thinking that they were going to get us right in the MRI, I didn’t eat.
Brock already begs us for food I didn’t want to eat in front of him. That’s
when the nurse found out that Brock had kicked out his IV and he was bleeding
everywhere. So they had to take it out. I think it was poorly done anyways in
the ER because Brock was so mad, so it was really hard to do.
We got done to the MRI at 8 however
we were there till 10 before we got into the MRI. So for 2 hours I had to try
and entertain him. He kept pulling off his leads so I got in trouble for
walking around with him and was told I had to sit on the bed with him. Luckily
they had a patient advocate lady who came and tried to help me and Brock get
more comfortable, she had them turn off the monitors, and she brought Brock
bubbles and toys. She also had an I pad she let him play with. She helped entertain
him so they could get an IV in. She asked me what he liked and I gave her a few
ideas but YouTube wasn’t working. then she asked "is there a show on TV he
likes" and I remembered Super Why, Honestly why didn’t I remember that
before, it worked like a charm and they got the IV in a ton faster and without
hurting Brock too much because he held still better. I used that for the rest
of the hospital visit whenever they needed to do vitals or he was getting
upset, I pulled it up on Hulu Plus on my phone. It saved my life.
I was mad it took so long to get
into the MRI. He really was having a horrible time, the ladies stuff helped but
he was done waiting pretty fast, Super Why helped but he was hungry and just wanted to
eat.
They kept telling me what it was
going to be like when they put him under. Over and over. They said it would
almost act like he was having another seizure. He would cry out and then his
eyes would roll back and he would be out. I thought I was pretty prepared but I
was most definitely was not. I cried like a baby when I got to our room. I
wanted to take a shower and get something to eat while I was waiting for the
MRI to be done however I never really got a chance to do either one. Doctor
after doctor, a lactation specialist, nurses, and students all came in exactly
when I was there. I told Michael I am going to take a shower now if they call
to have us get him just let me know. (He couldn’t go down because he was sick)
He ordered me something to eat and when I got out Michael was gone and I had
food there. I checked my phone had he had just gone down to get Brock. I tried
to eat a little but another doctor came in, finally I just ate in front of
everyone. I was starving and no one was going to let me eat.
Brock came back happy as can be. They
said he woke up really fast and he was just playing with the nurses when
Michael came down. He was more than excited to see Michael.
Now this kid was starving, he nursed,
had the bottle I pumped in the morning, and a few ounces of formula. He ate a
whole thing of baby food and a half of another, he had crackers and some of mom’s
peaches. He also had 3 oz. of Pedialyte. And was hungry maybe an hour later so
we ordered more baby food. He got a nap in as we were waiting for the doctors
to come back with the results of the MRI and we got a stuffed cow from the
Teddy bear clinic. With coloring pages that I’ll have to save for when he’s
older and a certificate for helping his Teddy (cow)
Everyone who helped him, talked about how cute he was. He even got the cutest patient award!
The doctors came in and said
everything looked normal, no tumor, or anything serious; and we are blaming it
just on genetics. The seizures are called tonic-clonic seizures. They let us
decided if we wanted to hook him up to a EEG for 2 days or if we wanted to just
go home and put him on some medicine. We decided just the meds at this time,
that it would be too rough to do the EEG and that he was too little for it now,
maybe when TV was an option or books. So they said ok and that we will get you
all ready to go home.
This was the view from our room. I
thought it was really cool. It was really pretty at night.
we had to listen to some seizure
safety stuff and learned how to do the emergency seizure medication in case he
has one while he is on his meds and it last more than 3 minutes or his has
multiple in a row. We have to keep it with him at all times and anyone who
watches him has to be trained to use it.
We were told we need to be very
careful around water or hiking with him. And if it’s Genetics like we all
think, then he should grow out of it in a few years. They gave him his first
dose of his medication in the hospital through his IV. And they took out his IV,so
he was very happy. We gave him a bath and he freaked out he was so excited. He
still has glue all over his head but at least he doesn’t stink. They discharged
us and they took Brock out in his car seat in a little wagon. I thought it was
cute but he was too tired to care
We got home around 6 and Brock was
just exhausted, we put him to bed, I stayed up to give him his 2nd dose at 10
and we all slept for 7 hours straight! He woke up at 5 but slept for 2 more
hours after he nursed.
The next day we did a follow up with
his doctor, the Medication makes him tired but after his morning nap he felt a
lot better and he didn’t even fuss when I took a shower. It was just a short
follow up but she did some checkups on him anyways. When she checked his ears
he hit her hand away and screamed at her. She was shocked and I just started
laughing. I guess that was his way of telling all of us that he was done. He
has his 9 month check up on the 11th of April and a neurology checkup in may
but this poor little kid shouldn’t have to see the inside of a Doctor’s office
or hospital for at least a couple weeks.
We were
very Grateful for no serious diagnosis as well as such awesome doctors and
staff
So
grateful for all of our friends and family who were so willing to help and
prayed for us, I just wish we would have been able to know what was going on so
that we could have asked for more help.
We are so
grateful for all the prayers said and the people who love us I could say this a
million times. We left such love.
We are so
grateful for our ward here they have been so amazing.
I am
grateful for our neighbor who works for Le Bonheur, she doesn’t know it but she
helped a lot.
I am
grateful for medical advances! I am happy to have this medication and that I
will no longer have to see a seizure (knock on wood for a very long time), if
ever again! Crossing fingers
I
just feel so loved and grateful to have such wonderful people around us. Thank
you everyone!
Here
are the 2 pictures Michael took, the top one was our "we are so happy we
are going home" (even Brocks cow felt better) and the second one Michael took of where he spent most of his time at the hospital, so he could "chronicle his experience."
