Time for a win- IVIG #3

It’s go time.

Tomorrow begins IVIG number three.  The last of the three infusions that were ordered by our physician and approved by insurance. 

According to Dr. G, we had to be “all in” for the three treatments.  He didn’t think that one or two IVIGs would be enough to make a substantial difference.  As unbelievable as that sounds, to think that an invasive procedure of flooding Hunter’s confused antibodies with good ones wouldn’t be enough…sounds mind boggling.  And we haven’t done it just once, but twice, coupled with a heavy dose of steroids. 

Here we are, in the final leg.  As a collegiate runner, Peter would be stacked in the lanes according to his previous heats or starting times that were entered by past performances.  I remember watching his final heat race in a 4X4 relay, and just being impressed that he had made it that far…

to the final heat.

Hunter has surpassed every expectation we have had in regards to the treatment itself.  He hasn’t resisted the IV insertion atypically (seriously, what kid wants to get poked and have an IV in his hand for four days?), he has actually asked to go back to the hospital, and overall, he has been pretty pleasant, even with enduring an itchy, irritating rash that has finally started to dissipate. 

And tomorrow, he enters his own final heat. 

 

I’m not full of the same nerves I had the first or second rounds.

The first month, I worried about anything and everything.  I worried about infection with an IV stick.  I worried about a reaction to the product.  I worried about him pulling the IV out and having to start anew.  I worried about his emotional reaction to us as parents, who are supposed to be the ones protecting him and keeping him out of harms way.  It scared me when I remembered his EEG completed last year to rule out seizures, having to sit next to him as he underwent 45 minutes of being strapped to a pappose, all the while screaming at me to “help him;” I didn’t think I would make it through 16 hours of IVs if it was the same scenario.

The second month, I worried about an anaphylactic reaction.  I spent the three weeks post-IVIG #1 worrying about the rash that had taken over his body.  I talked to any and every professional I could find to assure me that a second round would not increase his risk and that the rash could purely be a side effect- with no other factor involved.  I worried that we had made the wrong choice as parents, not seeing many differences the first month, or at least changes that were minute and could be viewed as something as simple as maturity. I worried we were about to enter into a second round of the unknown- we as parents were taking daunting risks.   The overwhelming task of decision making loomed over us until his IVIG week was completed and the month proved extremely successful.

This month, my worry is not about reactions.  I am not concerned about his tolerance for the IV insertion, much less leaving the IV in his hand for four days.  I am not stressed about schedule changes and logistical craziness for a week. 

This month, I worry that it hasn’t, and it won’t, do its job. 

IVIG has been proven to show effectiveness for so many diagnoses, so many debilitating illnesses, and many autoimmune disorders.  So in theory, we have made a good, solid, documented, recommended decision.  

Here’s the thing…this choice that has kept us up multiple nights, overtaken our minds, and burdened our hearts has been one of the scariest, yet most optimistic decisions we have ever made.

We have chosen to give him a second chance.

For if we had not chosen optimism since talking with the first neurologist while Hunter’s eye tic progressed at the start of this illness, or our pediatrician when he started walking on his toes a few weeks later, or when countless specialists told us that Autism couldn’t develop from a tic, or when our friends and family reassured us that this 17 month old boy was as typical as they come in regards to socialization, language, and intelligence, we would have lost hope…

As this illness spiraled in front of our eyes and stole so many precious moments of his childhood, so many minutes spent in therapy instead of playing at the park, so much of ourselves…we chose optimism to help us not only get through each obstacle, but to reach the day that a second chance would be given to us to truly help him.

We need to go into this week with so much optimism I should be Toyota-jumping down the hospital corridors.  This is the final heat.  In our minds, we have two months of victories, big and small, and Hunter is seeded to win.  He is sitting pretty in the line-up. 

He is ready…

and so unbelievably deserving of a win.

Dear God,

I’m not quite sure when I needed you as much as I do this next month.  I cried out to you when the tears would not stop falling on “Diagnosis Day.”  I have called out for patience and acceptance of this journey.  I have asked for your help in understanding the task we have been given.  We have walked in your grace and have endured your mercy, your strength, and your guidance that have led us to this important moment in our journey to truly have your light shine upon Hunter.  Our needs and desires of our hearts are apparent to you, but I still cry out and ask for your presence as we enter IVIG#3.  I believe you are a God of power and strength, as we wouldn’t have made it here without that testament of faith.  We have been disciplined and have not asked for the unattainable in prayer…we know this journey is Your plan, and I truly believe that others will witness your healing hand in your miraculous power to heal our son.  We have seen glimpses this month and are most grateful, but we continue to pray…

Heal our son with your hands.

Bring him back to us. 

Amen.