ROUND FOUR IVIG- attacking with the "big guns"

After winning another short-term insurance battle (we aren't quite in the clear for subsequent infusions), we sat for another four days at Children's receiving Hunter's fourth round of IVIG. 

I can't really explain my emotions this week.  Started out feeling kind of blah.  This all seems so routine, yet still a little novel.  Walking down the hallway to stretch my legs, while Peter sat with the boys the first day, my thoughts turned to the reality that this experience could become very familiar to our family. 

Here was the start to day one...

taking his blood pressure, temp, and weight

IV insertion was a little rocky...he ran from the room, hid in the corner, and screamed the entire time...but once it was in, we were good.  And the nurse only had to do one stick!

Peyton put his hand over my hand in our chair that we were sharing...he must have knew I needed someone to hold my hand this morning!  One of the sweetest moments ever!

 couple hours in...starting to smile...

noticed his Vitiligo on his fingers...it was there last year, but I thought it was b/c he was biting his fingers...looking closer in this natural lighted room, I realized it was the autoimmunity taking over

peyton selfie

Hunter has had some behavioral struggles the past few weeks, and the most notable novelty was his compulsion with phrases. Some of these I know he picked up from school, and others are from books and movies...whenever he gets upset, or we tell him to do something, or correct an action, we get  the following:
"You're being the boss!"
"It's not true!"
"How dare you!"
"You're being rude!"
I am going to document the usage of these phrases, because I have a feeling they will decrease after this round of IVIG.  The week prior to IVIG, this verbal compulsion was driving us nuts.  We need it gone!

 Day Two started off a little smoother...cleaned the IV, started the meds, and we were out in three and a half hours.  Just a few complaints, but overall a good demeanor.

 

 

 By Day Three, we were all exhausted.  The last week of school for Paige, trying to work all afternoons after IVIG to get my sessions in, and daddy out of town makes us all sleepy...Wish I could have crashed on the drive home!

 

 Day Four.  The End.  Everyone woke in great spirits, we sent Paige off to school with best wishes for her last day as a first grader, and headed to the hospital for the final lap.

Superheroes today!

 

 

Since yesterday, I have had my happy boy back.  I purposefully agitated him a bit with taking away the tablet, turning off the TV, and he had the normal frustration, but no hitting, no screaming, no verbal compulsions.  He woke up this morning wondering where Daddy was, if they could take his IV out today since it was the fourth day, and remembered that we would go to Jason's Deli for dinner tonight to celebrate the end of Round Four. 

 

I know it seems infallible, but his eyes once again look alive. 

 

I know that progress  has to be carefully judged- I know that our emotions can sometimes overtake our minds.

 

However, I know this even deeper....

 

I know that every day is planned.

 

I know that every step of this journey has brought us to this point.

 

I know that even though we have had moments of weakness, despair, and giving up, perseverance remained.

 

I not only know that I believe that IVIG will work,

 

I know that it has.

 

I know that optimism has to remain- and doubts need to subside. 

 

If we live our life always listening to doubts, reading articles that play devils advocate, or distrusting our doctor who has devoted his career to healing those with Autoimmune Disorders, we would already have lost.

 

When we agreed to start IVIG, we also agreed to have faith. 

 

We agreed to believe.

 

We agreed to WIN...for in believing from the beginning, you have already won half the battle.

 

Bring it on with the big guns of faith, optimism, and perseverance.

 

Each case is unique, each patient with his own start, his own internal makeup, and for Hunter, the perfect storm that caused this cascade chose its own path.

 

We have worked incredibly hard to find that route and not only identify it, but fix it.

 

We may never have Hunter completely back, but by believing in him, and Him, we have already won.

 

 



hunter received  this letter from his SLP in the mail yesterday-read it almost all by himself!