Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
As I look for the words to explain what is happening with
Parker, I want to impress upon everyone who reads this that Parker is such an
incredibly strong youngster dealing with way more than his fair share, yet he
is enduring all of this like a champion.He persists…pushes himself…encourages Michael, Logan and I in such a way
that I cannot find the words to match the enormous gift he is to our
family.Logan, Michael, and I have a
front row seat to witness his passion for life and his appreciation for the
love that surrounds him.He is so
thankful for all who are praying and encouraging him.And so are we…
On Monday, we went to see the neurologist for a follow-up
appointment. Parker explained to the
doctor that he felt he was getting worse.
He told him that his eyes were now blurry all the time and the episodes
of intermittent blindness have tripled. He
also explained how his ears feel like a thunder storm and ring and it is hard
to hear. And his head had more pressure
and his whole body was now in tremendous pain (surely a JA flare). And his tongue tremors when he sticks it out…
The doc examined the inside of his eyes and Parker asked,
“How does it look in there?” The doc
replied, “Let’s just say, I wouldn’t want this in my eyes.” Then, he turned to Michael and me and said we
needed to do a direct admission now and plan on another spinal tap in the
morning. He explained that if his
pressure was ok, then his increased pain may just be because we stopped the doxepin. But if it was the same or even higher then we
needed to talk about next steps which might include a shunt. So we prepared for admission…by going to get
food, because he would be on a drip until his spinal tap with no food or
drinks. And Michael went home to pack us
a bag and get meds.
Last bit of lovin' prior to spinal tap.
I tried to keep Parker busy until we had to go for the spinal
tap at noon the next day. He knew
exactly what would happen, since we had only been here 2 ½ weeks prior. The surgical staff was welcoming and he cut
jokes, re-introduced them to Igi and talked about how Igi has been through
everything with him…he then explained the whole procedure to the surgeon and anesthesiologist. Then, he kept telling me that I was a
wonderful mom. And of course, we took a
As I sat alone and waited and prayed for my sweet boy,
the surgeon came in and sat on the couch next to me. There is something about the doc taking a
seat next to you to talk. He started
with how incredibly remarkable Parker is and that he is so smart and kind and
that he chatted with him prior to the procedure. He felt that Parker was handling all this better than most adults. He said that he really thought
he would be better this round…he was not.
Parker’s pressure had increased in the last two weeks even more and was
now at 42. He said he took off enough
fluid to get him down to 20 but he was certain, this time, the post headache
was going to be worse; and that we should really just let him sleep through the
first two hours of not moving. He then
went on to explain that he was most concerned about his vision. As I sat staring at him with tears welling up
in his eyes, I began to cry. I
asked about my biggest fear…could he go blind?
The answer…yes. He then said that he felt that doing a shunt in his head
is quite complicated with his medical issues and that he felt that they were
more likely to do a shunt in his spine or put a bolt in his head to
periodically tap it and drain fluid as pressure builds. I then said, “no, he can’t lose his vision,
he has lost too much and this cannot happen to him.” After he left, I sobbed…both his pseudo tumor
and the papilledema had gotten worse.
Once I gathered my composure, I went to Parker and held
his hand over the next hour and until we went back up to the room. Well…..the plan had changed while I was
downstairs with Parker. The neurologist
had talked to the neurosurgeons and they didn’t feel comfortable doing surgery
until there were no other options…so they decided to increase his Topamax and
send us home. I asked why because it
obviously was not working for him…but he was firm that this had to be done
first. So then I asked if that meant
that he would need another spinal tap. He
just said we would cross that bridge when we get there. He then advised us to find a neuro-ophthalmologist
who could put in a sheath in his eye to protect his vision because if this
pressure on his eyes continues for another 4 months (6 months total), then it could
cause permanent blindness. Unfortunately
the neuro- ophthalmologist at this hospital was in the process of relocating
and the next closest doc that he knew of who does this surgery is down in
Miami. So, we packed up and went home
that evening to explain to Logan what was happening to his brother, to rest,
and to come up with a plan.
Yesterday, I called Parker’s rheumatologist/immunologist
and explained what was happening. They
too would recommend Miami but that they also have neuro-ophthalmologist at
their hospital. So, now they are trying
to get Parker in by Tuesday (since we will be there anyway). Today, I spoke with Parker’s insurance case
manager and the Miami docs are not in network.
So, if we have to go that route, we will have to get special permission.
Hospital art made with surgical instruments.
We thank everyone for giving us some space to be a
family, to process all this, and to move into our next steps. Of course, we are clearly not done with this
newest battle and we appreciate every single sentiment, words of encouragement
and your ongoing endless prayers for Parker.
Much love and hope.