Thursday, October 13, 2011

Turning Their Hearts

Several friends and I were lamenting over the hardships of rearing our spark plugs.  Some days, it feels as though we spend every waking moment dealing with attitude issues and poor behavior.  Days like these leave us parents exhausted, aggravated, and frustrated.

Today, I was encouraged by reading in 2nd Chronicles about Josiah - a king of Judah who rose to power at the tender age of eight after his wicked father was assassinated.  This child king had no Biblical training, or none that the Bible records, and presumably what short influence his father had on him would not have been in alignment with God's commands.

Even with such a rough start to life, the Lord turned the heart of this king to fully follow Him, and after humbling himself, Josiah led all of Judah in repenting of their sin and renewing the Temple sacrificial system.

It's my job as a mom to train up my children in a manner pleasing to the Lord (remembering to honor my husband as I do so), but I must also remember that it is His job to turn their hearts toward Him.  Raising children requires a blend of faith and trust as we seek to follow the Lord each step of the way.  I don't have that perfect balance figured out yet, but I love the Biblical reminders of God's greatness to intervene and turn hearts toward Himself.

Along the way, He will encourage and strengthen us so that we can find joy even in the midst of weariness.

Tuesday, October 4, 2011

So, What's This CSF Stuff Really All About?

CSF, CSF, CSF...try saying (or typing, for that matter!) this three times in a row, and you'll probably find yourself switching the letters around.  I certainly do.

CSF stands for cerebro-spinal fluid, the liquid that surrounds the brain and spinal cord.  It's some pretty awesome stuff.  When it's appropriately contained by the dura, the special membrane surrounding the brain and spinal cord, it cushions and protects this extremely vital organ.  Jon's CSF, however, isn't staying put.  For reasons unknown to us, a hole developed in his dura somewhere up in his sinuses, thus breaking the needed pressure seal and allowing CSF to leak away from the brain. This creates myriad problems, from something as simple as congested sinuses to as dangerous as having the brain collapse on itself.  Without the steady pressure that a completely sealed dura creates, havoc ensues.

Jon's surgeons believe that he developed his CSF leak around age 15, but he lived with it undiagnosed until age 30.  His symptoms mimicked those of severe allergies, although he'd known for years that allergy medications, even prescription-strength, did nothing to ward off his intense reactions.  He also noticed that there was no pattern for his splitting headaches and and bouts of nasal discomfort.  He wasn't any worse during allergy seasons, and he felt no better once offending pollens diminished.

After L was born and we'd reached our out-of-pocket health insurance maximum, Jon decided to find out what was irritating his sinuses.  After allergy tests proved that he was not allergic to any known substances, the allergist labeled him with "non-allergic rhinitis," meaning his reactions had no known cause.

Dissatisfied with this answer, Jon asked if I could get him in to see an Ear-Nose-Throat doctor.  The Lord completely worked out all the details; usually, a patient has to see a regular doctor and then be referred to an ENT.  Since Jon's doctor had already referred him to the allergist who had given him a diagnosis, the chances of that first doctor choosing to override the allergist's opinion were slim.  However, the phone receptionist with whom I spoke pulled some strings and got Jon the ENT appointment without a referral.  Were we ever grateful for that!

Toward the end of the consultation with the ENT, this new doctor asked Jon if his nose leak tasted salty.  This one question changed Jon's entire course of medical care. 

CSF can have a salty or even metallic taste, we later learned.  Had we known that years earlier, Jon might have gotten help much sooner.  CT scans and MRIs showed that Jon had not only a severe leak but also brain prolapse into his sinuses.  Even with the severity of his case, Jon was very blessed to have had only minor headaches (some CSF patients are completely disabled by pain); to have avoided any bouts of meningitis; and to have experienced no mental distress even with the prolapse.  The Lord was protecting him even in the absence of needed medical care.

One reason that diagnosing Jon was so difficult is that CSF leaks are rare.  An estimated 5 in 100,000 people have them.  Of that number, the vast majority of cases result from trauma, such as a car accident or surgery, and of those that are spontaneous (meaning the cause is unknown), most are middle-to-late aged women.  So when a 30-year-old male with no history of trauma walks in complaining of a runny nose and headaches, CSF isn't the first thing surgeons look for!

As soon as Jon was correctly diagnosed, his doctors treated him as an emergency case even though CSF itself is rarely fatal.  Since it can easily lead to extremely serious situations, such as meningitis, it is nothing to sniff at.

At the time of his surgery in August '09, we thought that would be the end of his treatment.  What we'd not realized is that in cases of spontaneous CSF, the repairs often do not hold.  We heard of one patient who has had 14 repairs to date!

Currently, it is not completely clear whether Jon has another CSF leak or whether he only has blocked sinuses.  No brain prolapse showed up on his most recent MRI.  His upcoming surgery on October 24th will be out-patient surgery to clear up his chronic sinusitis, which is the same as having a continuous sinus infection.  The doctor gives him a 70% chance of staying clear after this surgery, so it's possible he'll need to have this procedure repeated from time to time.  While he is undergoing the sinusitis surgery, the surgeon will also do a visual look for another CSF leak since he has all the symptoms of such.  The difficulty lies in the fact that sinus problems and CSF symptoms are so similar that separating the two is often impossible.

Additionally, CSF leak diagnosis is relatively new.  It wasn't until the 1950s-1960s that doctors discovered cerebro-spinal fluid leaks as the culprit for patients with splitting headaches and allergy-like symptoms.  We're thankful that there is medical help available to Jon; 40 years ago, this would have been unheard of.

Certainly, this is not the most fun experience we've ever dealt with.  Even with the unpleasantness, however, we can clearly see the Lord working.  He helped us to get a diagnosis at the time when we could incur no further medical bills; He provided Jon with excellent surgeons; and He's shown us that even though this could be very dangerous, He's spared Jon from the worst scenarios. 

It would be easy to get caught up in the "what ifs" and unknowns of CSF.  But there is a lot to keep us grounded and thankful.  A friend of ours is going through a kidney transplant process.  Compared to the dangers and worries of organ failure, CSF is much, much less distressing.  And while Jon went through the barrage of CT and MRI tests, he witnessed many gravely ill patients.  He said it was a great reminder to be thankful for the health that he does have.  His symptoms, while irritating, are not consistent, nor do they occur on a daily basis.  It could even be called one of those "unseen" illnesses, since most people would never look at Jon and realize that he is sick.

While it is inconvenient and at times very frustrating, there are many positives - too many to remember or list.  We can witness the graciousness of God, even in something as unpleasing as a CSF leak.  It all depends on our perspective.  We choose to see the glass completely full:  full of God's mercy and blessing.  Life just doesn't get better than living under the protection of the Almighty God!

Monday, October 3, 2011

The Six-Month Hiatus is Over!

Imagine my shock when I looked at my poor blog and realized it'd been six months since my last post!  This is probably not the best way to keep anyone's interest, that's for sure.  Suffice it to say that we've had a wonderful but busy summer.

Now, however, I've had a bit of time to revamp my blog (a big thanks to my friend D for her help and encouragement as I fiddled with the design, layout, and tabs), and I'm looking forward to trying a few new things.  For example, many of you have asked for more details about Jon's cerebro-spinal fluid leak.  This coming week, I hope to put up a better explanation of what's happening and how we can see the Lord working through it all.

I also hope to write a few book reviews, and I want to share more of the humorous points of our lives.  My three spark plugs constantly lend themselves to hilarious situations and conversations, and it's important to remember that even in the midst of the tireless adventure of raising children, there is much joy along the way.

Enjoy the rain!