Saturday, November 29, 2008

PICU - Day 2.1

I find the irony just a bit twisted and strange that I wrote this less than 48 hours before we thought we had lost our son. Although the original idea was not very personal it just so happened that a blog post written by a dear friend of mine made it so. You see, she lost her youngest son not long ago. Just like Ben he was "exceptional." Just like Ben he was beautiful (okay, just for the boys, he was handsome). Just like Ben the unknown far outweighed the known.

Essentially that is the ultimate challenge of living with a special needs child...the unknowns. Just like "normal" families we fall into regular routines. Those routines get more hectic when our exceptional child becomes sick but we still have an anticipated expected outcome. Then the recovery routine kicks in and before long we're back to our regularly scheduled program. Except yesterday the anticipated outcome didn't happen. Or did it?

This has not only been an eye-opening experience but a return to a routine we were once used to. It was very strange to enter the Pediatric Intensive Care Unit at Greenville Memorial Hospital last night. Just like the neonatal unit of St. Francis Hospital for Women during the last three months 0f 1999, this new ward became our second home during Ben's first three years of life. The faces were familiar. The names of the nursing staff were on the tip of our tongues. Remarks about the growth of Ben and Jessie were numerous. We quickly realized this was once a lifestyle we had lived and honestly didn't want to return to.

We hate hospitals. Sorry doctors and nurses, it is nothing personal. By my bad calculations Ben has spent around 183 of his days in the hospital. That doesn't include outpatient procedures or even his brief admittance to The Childrens Hospital of Carolinas Medical Center back in July. I'm gonna estimate that about 75 percent of those visits have been in ICU. But here is the best stat that jumped out at us when we were reviewing his history. Since early August of 2002 Ben has spent a total of 13 days on the regular pediatric hospital floor (in our opinion, 8 of those days due to a doctor's incompetence) until this weekend.

Conclusions? There are none. Ben has continued to gain strength and beat illnesses that were supposed to do him great harm since the fall of 2002. But the Big Elephant in the Room just awakened. Shunt malfunctions. Increased seizure activity. Neurological problems that we may never know about. I feel sick to my stomach as I type this.

I don't want to feel this way but my gut tells me we have reached a crossroads. Good or bad, we are there. In the brief discussions since the onset of the latest "episode" Joan and I both agree that the next few months will be very critical for Ben's livelihood. Again, we have nothing to document our thoughts but our gut feelings have always been an indicator, particularly Joan's.

I will have more to say tomorrow - hopefully with pictures of Ben smiling that I captured with my cell phone this afternoon. Fatigue has just fallen over me like a shroud. Keep praying...please...keep it up. I cannot beg enough or implore you any more than I have so far.

13 comments:

Vodka Mom said...

I am hopeful. Hopeful that whatever His plan, whatever Ben's life path is, that your family savors every moment, and every joy that his presence brings. Prayers are with you all.

Astrogirl426 said...

Sending our love and prayers out to you; hoping you all get through this safely.

fivehusbands said...

I will keep sending prayers -

Annie said...

Sending prayers..

Gretchen said...

Still praying and thinking of all of you non-stop. Go over to Joan and give her a big hug right this minute for me.

Love ya!

Brian said...

We are here for you, Bennie.

Redneck Mommy said...

My prayers and love are yours.

I remember with heart breaking clarity the pain and stress you and your family are going through.

Somehow he always pulled through, until that fateful night. We never had a chance to face our crossroads. I don't know that I would have handled it with the grace and dignity you and Joan are.

I'm thinking of you, of Ben.

I'll be in touch. I's got yer digits now.

Bwhahahahaah.

Kyla said...

The prayers are yours, Bennie.

Theresa said...

I come to your blog from a tweet twitted by Looky Daddy! and have read through many of your archived posts. Ben is a doll, a real sweetheart and you, Joan and Jessie are blessed. You seem to be such a happy wonderful family and I would give anything to be able to experience just a moment of the joy you must share.

My prayers are with you all. Sending love, hugs, and good thoughts your way.

Sincerely from a new devoted reader, Theresa

flutter said...

here and thinking and praying for you and yours.

Adventures In Babywearing said...

You have been on my mind all weekend. I am praying.

Steph

cmhl said...

praying for your whole family---- I hope today is a better day...

Maggie, Dammit said...

I don't know how you do it, I really don't. Your strength must be endless. Ben is a lucky, lucky, lucky boy - and I know you know that goes both ways. I'll keep praying for your family.