It's amazing how quickly things can change.
A couple of weeks ago Brad and I started noticing Katy Jane
doing a funny little movement. It
started out only a couple of times a day and has increased. Now it is up to several times an hour. She scrunches up her eyes, purses her lips,
stretches out her arms, her hands tremble, she kicks out her legs, and then
squeals. That happens several times,
every hour, all day long.
Friday I sent a video of it to Dr. Honey. She had me come on up to the office. (In my experience, never a good sign). She had spoken to the pediatric neurologist
in Lubbock and
we were immediately admitted to the hospital for seizures. Katy Jane was hooked up to a 1 hour video
EEG. Then she got an IV and had several
labs drawn. The next morning she had an
MRI. Both the EEG and MRI came back normal
as well as the labs.
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| During EEG |
 |
| Hooked up to all of her machines |
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| Still precious |
We left the hospital Saturday afternoon planning on
returning Monday morning to be readmitted for a 24 hour video EEG because our
hospital won’t do it on the weekend. And
if no seizure activity showed up on the 24 hour EEG then we would be admitted
to Cooks Children
Hospital in Fort Worth.
In that time Dr. Honey, Dr. Brown and my brother-in-law Dr. Hoover have
explored many different possibilities as to what could be causing her spasms or
seizures. They are too impressive to
label as “behavioral”. After getting
settled back at home yesterday I was finally able to think a little bit more
clearly and remembered how many of Jude’s tests that we’ve had done here have
not been accurate. I asked Dr. Honey if maybe
we should just go on to Cooks instead of doing more testing here. She and Dr. Brown decided it would probably
be best to go on to Cooks. So then we
decided that I would need to leave today and we would be admitted on Monday. Over the course of the conversation we
revisited the possibility of this being something as simple as reflux. So as a test we gave her some Maalox
and it seemed to calm the spasms for a little bit.
Then we decided to wait on going to Cooks to see if starting
her on Zantac could possibly help. Dr.
Honey said this would be the strangest reaction to reflux that she’s ever seen
but maybe since Katy Jane is such a good and content baby…instead of crying and
fussing like most reflux babies do, she’s having these spasms.
Today I was hoping that with the medicine and adjustment to her formula we would miraculously have no more spasms but they were every bit as bad. I was so discouraged because I was desperately hoping that this would be an easy fix to a quirky little problem and we wouldn’t have to put Katy Jane through anything else. We’ve made a couple adjustments to the plan as far as medicine and formula go and we will see how that goes tomorrow. We plan to give it a couple of days on the new medicine before going to Cooks.
I go back and forth between being hopeful that this will fix
the problem and doubtful that this will fix the problem. Seeing her spasm like she does is very hard
to watch. It breaks my heart and scares
me. I guess it just seems so hard to
believe that such a response could be triggered by reflux. Too good to be true.
I’ve talked before about how when Jude was diagnosed I just
wanted to take him and run away from the hospital and not look back. I felt
hot and nauseated as I got the news that there was something seriously wrong with my baby. I felt the same thing
as I sat across from Dr. Honey once again hearing that we were going to be
admitted to the hospital with our precious baby. I once again found myself walking down the
sickening, painful, scary road of uncertainty about our child’s health. Thankfully our sweet Dr. Honey sat right
there with me as I sobbed, she cried with me, and prayed for my little Katy
Jane.
I willed myself across the street to the hospital and talked
out loud to the Lord, claiming His promises and reminding myself of His
faithfulness to us and that Katy is HIS child.
When I turned the corner onto the children’s ward it hit me like a ton
of bricks. I remembered the first time I
walked in there with Jude. I hate that
place. I never wanted to go back
there. The sights, the sounds, the
smells, the weary parents, the crying children, the awful IV room. Katy Jane rarely fusses or cries, but when
they were trying to get her IV in and her blood drawn my sweet girl cried more
than I’ve heard her cry in all her 8 months.
Heart. Breaking. And then once again finding myself led through
the maze of back hallways into the belly of the hospital where they did her
MRI. Sedation. Earplugs.
MRI. I love how the nurse informs
me of what will happen during sedation and the scan. I’ve probably gone through this with all of
Jude’s stuff more than she has. I am
pretty well up to speed on what to expect during these things.
Back at home Katy Jane is her sweet, content, precious
little self. She has her episodes and
then goes back to laughing at her brothers and being adorable. I am PRAYERFUL that reflux is the
answer. I waver between peace and
worry. We are clinging to the Lord and
trusting that He will lead us through this as He always does. Saturday morning I stood over Katy Jane’s
hospital bed and read her the Psalm for the day: Psalm 16. The Lord sweetly comforted me with His word, particularly
verses 7-8.
Psalm 16:7-8 I bless the Lord who gives me counsel; in the
night also my heart instructs me. I have
set the Lord always before me; because He is at my right hand, I shall not be
shaken.
We are not shaken. We
are weary, scared for our baby, perplexed as to what is going on, but our faith
in our Lord is not shaken. He is
faithful. He is good. He has allowed
this and it will work together for our good and for sweet Katy’s good. We are praying for wisdom in what steps to
take as well as wisdom for our doctors as they make decisions for her. We are praying that this medicine will cure
her of these spasms. We are praying that
her brain is protected and not being harmed by whatever is going on. We are praying for the strength to weather
yet another storm, not somehow but victoriously. Thank you for praying with us for Katy Jane. I will keep you posted.
Tonight I have this little sweetie sleeping with me. Makes me happy.
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