Wednesday, January 17, 2007

A Piece of Our History

Compared to our disappointment in the “luxury” rooms, that were so outdated, the patio dining for breakfast was surprisingly classy. The waves were within sight and sound and, on the 17th of January, you’d never be able to dine in sunshine, outside, with short sleeves back in Oregon. Wasn’t this Honolulu business trip sponsored by Rosen Corporation supposed to be a perk? Instead, John and I couldn’t shirk our “funks”; perhaps the delicious tropical breakfast would do just the trick.

Brayden certainly seemed to be delighted in his surroundings. In fact, we quickly noticed how enamored he seemed to be with the tree and its branches cascading over us on the lanai. Even the attention of the waitress, eager to flirt with our usually very friendly 9-month-old baby, couldn’t seem to shake his interest in the leaves overhead. John and I were slightly amused at the slight clucking sound he even made with his tongue – it was almost as if he were in a trance…

I remember little else of breakfast that morning – I think John and I intrinsically knew something wasn’t right with our little man, but were both easing each other’s unspoken concerns with excuses. I do remember settling back into our room and calling Michele immediately.

“Hey Michele, yeah, everything’s fine – not exactly what we had in mind in terms of accommodations, but it’s okay. Hey could you describe to me what exactly happened with Traig’s fibril seizures? Yeah, Brayden’s acting a little strange…. Does he have a fever, well, no, not exactly, if he does, it’s really slight, but he seemed unsettled on the plane ride over and didn’t sleep right, yeah, he’s probably just a little off kilter….”

Oh, but you know, off kilter doesn’t exactly describe what happened next. Brayden was doing his typical “army crawl” across the floor, when all of a sudden, he just checked out. His eyes drifted to one side, his right arm began shaking, and his tongue vibrated in his mouth. I alerted John to what was going on, and no amount of urging, cooing, pleading, or crying could get our baby back – he wouldn’t respond.

Panicked, but working as a team, John and I ran to the concierge desk, clutching our little man as he remained “checked out”. We were given directions to a clinic set up on weekends for tourists and set off on our way. Within a block or two of leaving the hotel, Brayden “checked back in”, smiling and interacting, giving me hope that our son was back and hopefully would not leave us again.

But, he did. In the waiting room at the clinic, and again, right in front of the doctor, his symptoms returned, and, just as mysteriously vanished. The doctor checked his temperature as well, but we knew, it had nothing to do with any high temperatures – he was stumped and worried – and sent us on our way to Kapiolani Children’s’ Hospital in their own shuttle van.

Amazing what your mind fixates on in emergencies. Why were they driving us? It wasn’t an ambulance, would we get there any faster? How would we get our vehicle back? And, why was there no car seat for our baby? I remember that being very alarming to me, as if that made a world of difference in light of what we were facing.

The triage doctor had to just take us for our word regarding Brayden’s “episodes”. He seemed to be absolutely normal by the time we reached the hospital, but that comforted us little. We knew what was coming, so it surprised us little that they decided to admit him to run a series of tests, beginning with the CAT scan. Had it just been a couple of years prior that we had read and agonized over our friends’ baby who had had seizures suddenly and been diagnosed with a brain tumor? How could this be happening to us too?

The first task was to get the IV in him. I consider myself an amazingly calm person in the face of crisis (sometimes to a fault…) so I knew my presence in the ER room was not impeding the process. But, it was agonizing to watch as they strapped him down in a “papoose board” so he would be unable to move and attempted to get an IV in him (quite unsuccessfully, stabbing him repeatedly….) He wailed, and I offered sweet words of encouragement to him. Finally, the doctor told us we had to leave – they said he was looking to us to rescue him and our being there only made it harder for him. That was the darkest moment I’ve probably ever had as a parent.

John and I went to the waiting room and held each other, and I went to the bathroom, and lost it, right there by the automated hand dryer… I knew my losing it with John would make it more about me than Brayden, and I knew I needed to be strong, but in this private, with God and I – I cried, begged, and pleaded for the life and health of my baby boy.

I remember next sitting in the hallway with John, closer to the CAT scan (they allowed us to move there after they got the IV in) – we got on the phone, then, doing the only thing we were able to constructively do at that point – and called our closest friends and family, imploring them to pray. Then we prayed and waited.

It didn’t take them long to wheel our little patient out, he looked so small on that big gurney – so innocent, precious, and perfect. It was a heartbreaking sight. They then moved us to another floor and settled us into the room we’d end up spending our vacation in – DEFINITELY not the deluxe accommodations we had hoped for.

Right as the nurse was leaving, we cornered her for any insight on what they’d found. She may have dismissed protocol that afternoon, but in our hearts, she became our hero when she revealed the CAT scans had shown nothing of concern. I think, from that point on, John and I knew it was somehow going to end out okay.

As hours and days went on, everything continued to come up inconclusive. Blood draws, spinal taps (big “no” to meningitis), EKG (big “no” to a hole in the heart that would lead to a blood clot in the brain), EEG (checking brain waves), and finally an MRI and MRA to examine the brain closer. Epilepsy seemed to be the best guess they had had, and that was a hard pill to swallow. In the beginning, we knew it could have been an option – better than brain cancer by far, but a lifetime with an epileptic condition? Do we treat with aggressive drugs, or just act accordingly when the seizures rear their ugly head? We were discharged from the hospital with instructions to return the following day.

I remember being beside myself with anxiety that night. How could I sleep knowing that my son could have another seizure and I would be unable to help him? What if he suffocated? How would I ever sleep again, much less ever have him leave my sight? John spoke words of wisdom to me about it being out of my control, and there was nothing any amount of my worrying could do to change that. I had to trust in the Lord and rest in His will. That hit home, and miraculously, we all managed to sleep.

Upon returning to the hospital, the doctors arrived with looks of wonder on their faces. They had news for us, and it began first with the fact that Brayden did not have epilepsy. (Phew). Brayden was diagnosed as having had a very minor stroke. Yes, stroke. Only by carefully re-analyzing the sophisticated MRI did they catch it, the telltale signs or something you would expect to find in a 90-year-old patient, not a 9-month-old patient. At that point, it was unheard of*, but undeniably, our son had had a very small stroke, affecting rather insignificant (in terms of long term effect) capillary blood movement. We didn’t quite know what to make of it, other than agree with them, that, yes, our son was “special and unique”.

After a few more conclusive tests that Brayden had no “predisposition” towards future strokes (there were a couple of more tests that had to be run in the states that further proved that within the following weeks) – we were free to leave – for good – Kapiolani Children’s’ Hospital. We made the best of our remaining days on the island by celebrating John’s birthday at a wonderful restaurant, finding an outlet mall (yes, that is the ultimate gift for John) and hitting the beach.

I wish all of our friends and family could have seen Brayden those following days – it was as if God inspired upon him to be so full of character and happiness to completely compensate for our earlier fears. We knew our calls home to tell everyone the news could do little to comfort them compared to what it was like to have this vibrant, interactive boy by our side – who, all of a sudden had picked up a few more sounds in his vocabulary and began crawling on all fours – hmmmm, that little short circuit seemed to have an effect after all!

I know this story has been long, but it was important for me to record it all down as I remember it, eight years ago. The tears still flow as I recount it, as they occasionally do when I look at the pictures. Or, sometimes, when I just look at Brayden and remember.

I know so many people go through tragedies and don’t ever get the opportunity to ever see it in a positive light. God blessed us to be able to see this one in just that way. What a lesson I learned in recognizing how much I must trust in the Lord – and how I will never again take the health or mere existence of my children for granted.

Today, I watched Brayden on the basketball court – dancing as they lined up to decide who should be guarding whom. He then immediately engaged his “buddy” in silly faces and giggles. Clearly, playing basketball is more about being with people and having fun than it is winning for Brayden. In mock embarrassment at his silly dance on the court, I sheepishly said to the parent sitting next to me, equally amused at him, “well, he did have a stroke at 9 months of age, some times we wonder…” Her eyes lit up, clearly, I’d shocked her and I then proceeded to tell the story again…

* It has since come to light that babies do occasionally have strokes, more than we might ever guess – it’s just most are never detected…


LiteraryGirl said...

I remember exactly where I was when I got the phone call, and how I cried, and prayed, and then how much joy I had picking you up at the airport and hugging Brayden. You guys always inspire me with how you handle the big and small tragedies in your make a great team and have great perspective. I learned a few things I didn't know about the situation reading this. Thanks for sharing.

StephieAnne said...

Thanks for wading through it, Jodi, LONG POST! Yes, I remember meeting you at the airport too, Brayden in his Carter's pj's with a hole forming in the foot......and you all so relieved to see him acting like Brayden!

HollieHobbie said...

I gotta ditto Jodi, except for the picking you up at the airport thing (I didn't even know you then!). But you and John do handle the big and small tragedies as a great team and you do inspire me also. You guys are so cool at putting God first and giving up so much control to him. If I ever get in a tragic situation expect phonecalls from me asking for words of inspiration!

stephietoo said...

I still have that picture of Brayden smiling, standing in the hospital crib, in my 'treasured memories' box. We love you guys so much! That must have been tough to have to go through it again in order to get it written down. You are right though, I remember that being the time that Brayden really started taking off in the talking, crawling, and then walking areas. The next thing that came was "deit-chue" (Love You); and "geit-chue" (Thank You). Travis and I still say deit-chue to each other. We love you all so very much!

Colie said...

I too remember getting the news of Brayden. 'Listening' to your story and now being a mother myself intensifies my feelings. Emotion overload of anxiety as well as blessings - I can only imagine. I love the pictures you posted. What an amazing little man - now growing up so fast!

Thanks for sharing!