Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately. After a family talk, we decided it was time we share…but please know this is hard. We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines. I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback. His therapist is amazing and we are very impressed with this technique. Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away. This is pretty major and we are so proud of him.
One reason we haven’t blogged lately about Parker is we
wanted to first find out how Logan is processing all of this. He is in a better place now and he wants us
to continue to blog. Then there is
Parker, he has been processing some very intense and heavy thoughts because we
got some additional scary news about a week and a half ago. We are quite proud of Parker too. He processed his concerns aloud with me and
his counselor. He too wants us to share
what is going on. Michael, the boys, and
I have prayed and talked and processed and we feel that others need to know
because we need support; we want others to learn about the various paths this
disease takes; and we need help raising funds so that one day there will be a
cure for children with juvenile arthritis.
Parker has complained for quite some time that his chest
hurts. In fact, he has had chest pain
throughout this battle against systemic JA.
Several times it has been costocondritis (there are joints in the rib
cage and they can become inflamed and painful), other times it has been the
pericardial effusion (swelling of the heart lining), and sometimes it was his
asthma. But even after his last round of
pericardial effusion he has continued to complain. And when we were at the rheumatologists this
last month he was having the pain again so they ordered a stat echo
cardiogram. It came out fine. Thank God.
So then we talked about how maybe since we have been trying to decrease
the steroids, that maybe it was his bodies way of saying “hold on…I like those
steroids…I am use to them…now I have to work harder to breathe…” So we thought maybe it was causing his asthma
to flare because he is so steroid dependent now. But, he also had been on this dose of steroid
for over a month now.
We decided it was time he see a pulmonologist to get help
with decreasing the steroids. Because
Parker’s rheumy is about 2.5 hours away, she suggested we go to our local allergist
(who knows Parker very well) and get a referral to a local pulmonologist that
she recommends. So we went and the
allergist ran a PFT (pulmonary function test)…he failed…moderate
obstruction. So she increased Parker’s inhalant
steroid and sent us to the pulmonologist for consult. At this point, we were seriously thinking
this was just his asthma (please don’t take me wrong…asthma is serious too…but
you have to remember we have been dealing with asthma his entire life and we
have felt like we totally had that medical issue under control).
We went to the pulmonologist last Monday…Michael was out
of town on business…oh how I wish he would have been home, because I felt like
our world had turned upside down just as we had started to roll along a good
path. This newest doctor was such a kind
and gentle spirit and I am so incredibly thankful that he had the nurse take
Parker out of the room while he first explained to me what his impressions
were. It helped me hold it together
better when he later explained to Parker.
During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more… He repeated the regular PFT and once again…obstruction. This led him to further tests…a more complex PFT. The spirometer reading was not good… it showed not only obstruction but also restriction and this means he likely has mixed lung disease.
So you might be thinking, what in the world does this mean…because I certainly didn’t understand it. I am still trying to understand it. Apparently there is no part of the body that is immune to the attack of systemic JA! When they say it can affect any organ…well, now we really know this. I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much. He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work. This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security. Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease. The pulmonologist said that he is like 1% of kids dealing with pulmonary disease. This explains why his chest has been hurting and burning. It also explains why he has been sleeping a lot more again.
So, yes, our son’s body is attacking itself! And we are obviously all concerned about this. The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power. Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.
