Regretting a very bad decision

Regret.

 

How do you go on with regrets?  How do you move past the hindsight?

We were called to come into Dr. G’s office today.  What I had anticipated transpiring was far from the actuality of the situation.

He asked me to start with an update, and I gave him the timeline I typed up for him last night from months 1-6.  There were so many variables that could have affected behavior and data judgment:

1)      We took a break between round 3 and 4 due to insurance denial.  We went eight weeks between infusions instead of the recommended four.

2)      Dr. G had prescribed steroids (125mg) of Solu Medrol with infusions number two and three due to the rash we encountered with the first month.

3)      School was out- Dr. G had originally said to throw out all of the summer data due to the transition to the “non-routine.”

4)      Our ABA therapists changed multiple times.  We went through a total of fourteen therapists in the past school year. Can’t really rely on data from therapists that are not consistent.  We also didn’t have a functional, updated BIP (a big no-no)- so each therapist was responding differently to his behaviors.  We actually just asked for discharge due to the inconsistency.

5)      Paige had strep at the beginning of month four. 

6)      Trip anxiety could have affected his behavior.

7)      We started an antibiotic at the recommendation from the Nurse Practitioner we saw, based on clinical history and Sinusitis.

 Turns out decision number seven is the one I am regretting the most. 

 I was convinced at the time of giving the antibiotic that something medically was going on with Hunter.  He behavior was erratic, he was endangering himself by eloping from our house, his OCD was off the charts, separation anxiety was at a level never previously experienced…and “how dare you’s” were in the hundreds every day.  He couldn’t get through an ABA session.  He woke up angry everyday.

So we did what we thought was best at the time.  We started the antibiotic. 

And now the future of his further immune modulated treatment could be over.

Dr. G was not happy about us going against his recommendation and starting an antibiotic.  He basically told us that he didn’t know the direction to go now, since we had “muddied the waters.”  He may not feel comfortable recommending further treatment.  Could the antibiotic have made the difference?  Would he feel comfortable making medical decisions after we had intervened with another agent? Would insurance even approve the next rounds, since I had entered in another variable, and the medical director mulls over the records with a fine tooth comb?

Dr.G said that the immune response is an evolving, growing organism that once activated, can go against the brain.  There are studies of other treatments in cancer and other disorders where they go in and remove a tumor, and even though the agent is gone, the immune system continues to respond incorrectly.  The same can go for Hunter at this point, which is why he doesn’t believe that strep can be the only trigger. 

We asked about the steroids, and if the results we saw after month three were related to the steroids and NOT the IVIG.  His answer was not what I wanted to hear. 

“Sure.  They were a heavy dose that could definitely impact the immune system.”

 With each statement, my heart sunk deeper and deeper. 

 I had just known, in my heart, in my mind, that we had found the Dr. who would bring Hunter back to us. 

I wanted to believe so badly that he was the one who held the answers, the key to recovery.

And now, because I gave Hunter an unrecommended antibiotic, we may have lost him. 

 

I had many rebuttals for the dr.- he had originally told us to throw out all summer data.  Omnicef , the antibiotic, isn’t even typically for strep- it was prescribed for Hunter’s sinusitis.  Would it have really made that much difference?  What about the month break we took between the first three rounds and the next three- did that month off throw him into the behavioral regression? Would he have recommended treatment if we hadn’t intervened, due to the regression we encountered months three through six? If Hunter had an ear infection, would I not have been allowed to treat him due to data?

I just can’t believe that ten days of an antibiotic could be responsible for the end of the search for treatment that has consumed my life for the past 1,645 days.

I also feel that I have tainted our relationship- I basically went against his decision and followed the advice of another professional- and even though he has told us many times before that he doesn’t know the antibody causing the problem in Hunter’s immune system, he did believe in our story, believe in the possibility of recovery, and recommended the IVIG.  He had told us last week that he wanted us to meet with a psychologist for in-depth testing, and now he said that it wouldn’t make a difference. 

I feel like he Is no longer invested in our case.  He told me before he left the room that it wasn’t supposed to sound like a slap on the wrist, and not to be upset, but my stomach was sick.

Being a parent is the hardest job I have ever had.  Every decision we make impacts the lives of these young children- and unfortunately, one really, really bad decision may have ruined our true chance at recovery.

In the beginning when Hunter got sick, I regretted so many things- one main regret of not asking for a new antibiotic after he reacted to the first (they just gave steroids and never a new script); and now here I am regretting that I gave them.

Peter and I are supposed to talk this weekend (he had to leave early) and conference with Dr. G on Monday or Tuesday…not really sure what we have to discuss, since we may have reached the end of the road.

 

Why?  Why is life so unbelievably unfair sometimes? 

It seems those of us who try so hard, give everything our all, and fight daily battles just to find some normalcy get hit the hardest.

Maybe that’s why they call us special needs parents Warriors. 

WORN- Tenth Avenue North

 https://www.youtube.com/watch?v=UUEy8nZvpdM

I'm tired
I'm worn
My heart is heavy
From the work it takes to keep on breathing

I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
'Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

And my prayers are wearing thin
I'm worn even before the day begins
I'm worn I've lost my will to fight
I'm worn so heaven so come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Yes all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn