IVIG ROUND FIVE

We started the fifth round of IVIG on Monday morning.  We received authorization just in time for the meds to ship and arrive for his 8AM treatment. 

prior to leaving for the hospital- excited about round five

big sis wanted to come Monday to check it out!

One of the ICU nurses was on the floor, so she just decided to start his IV (we have always had the same nurse insert it).  Unfortunately, the combination of the new nurse and the anxiety about getting stuck led to screaming (enough for Peter to hear it outside of the infusion center) and a blown vein.  Drat.  Now we had to do this all over again.

The second insertion took in his other hand, and the IV was started.  He was upset throughout the morning, and Monday and Tuesday he seemed to be easily agitated.  Yesterday at Peyton's T-ball game, he just seemed unsettled.  He would have me start a book, then scream, "I'm hungry!" A few minutes later, "I"m thirsty!"  I am thinking he may have been feeling the secondary side effects from the Gamunex (nausea, etc) and didn't know how to read his body signals. 

This morning, even though he woke shortly after 5, he has been extremely pleasant.  When we arrived at the infusion center, he kissed me a thousand times in the waiting room.  Since it was just him and I this morning, I sat with him in his big infusion chair and read to him, as he put his hand sweetly over my arm and continued to give me snuggles, kisses, and "I love you Mommy!" over and over again.

trying to wink and give me a thumbs up

He wanted me to get him a snack, so I left the room to go down to the main floor of the hospital and I came back to this:

 

I have to admit, I was scared when I walked in and saw his eyes closed.  When the nurse checked his IV this morning, she gasped and had the other nurse come back.  His IV line had kinked and the soft needle had started to retract from the vein, but they were able to retape and save the insertion process (didn't want to go through that again!).  They watched him longer this morning as they started the Gamunex, to make sure that it was inserting properly (the nurses also always flush it first thing in the AM to make sure it isn't occluded).  So when I walked back in and he was lying on the pillow, I ran over to him...but saw his chest rising up and down.  He was sleeping like a baby.  I think the Benadryl and early morning combo got him today.

 

 

We have one more day for this round and we get to see where IVIG leads us this month.  After last months' regression, we started questioning the effectiveness of the treatments.  One of our main concerns was that perhaps we were seeing the effects of the steroids given prior to treatment two and three, and not the IVIG.  We know he does exceptionally well on steroids, so was our progress related solely to that?

 

 

Peter and I both told ourselves that if we did not see progress this month, we would meet with Dr. G and stop treatment.  I know in my heart that Paige's strep was the main reason for the decline last month, and we also skipped a month between treatments due to the approval process.  We also started summer programs and his schedule was turned upside down.

 

However, we can't keep making excuses.  We need to see the evidence.  This morning, when he woke so happy and loving, it was the same situation we had with all the previous rounds.  Day three, for some reason, we start to see our sweet little boy again.  But a few days in the beginning does not justify the treatment if the results do not last.

 

Data collection is critical this month- not for Dr. G, but for us as parents.  Dr. G told us to throw out summer data, but as a parent, even with external factors changing the situation, I need to know that I am doing the right thing for my child.

 

Wednesdays are hard days for me as a mommy, because it is the clinic's high volume day.  I see child after child walk in with a mask on their face, some in strollers or chairs, some without hair, here to receive their monthly treatment that doesn't serve as a tool to reduce brain inflammation- they are here mainly to help their little bodies survive.

 

I look at each family and envision their lives at home- what they do to help their child thrive- and have to be appreciative and thankful for everyday we have with our son.  Instead of medical procedures, masks, a no-visitor policy, and hand sanitizer in every room of the house, we are attempting to help Hunter thrive with therapies and pragmatic skills lessons to help him survive in the social world, and attempting to reduce autoimmune encephalitis with IVIG.

 

I don't think one world is easier than the other- we all have our worries as parents. 

 

But these parents and I do share one commonality:

 

We are fighters.

 

Our children are fighters.

 

We don't give up.

 

Josh Groban- You are Loved (Don't Give Up)

https://www.youtube.com/watch?v=EGLSk3AVcUU

 

Don't give up
It's just the weight of the world
When your heart's heavy
I, I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I, I will break it for you

Everybody wants to be understood
Well, I can hear you
Everybody wants to be loved
Don't give up because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I, I'll be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I, I will shine to guide you

Everybody wants to be understood
Well, I can hear you
Everybody wants to be loved
Don't give up because you are loved
(You are loved)
You are loved
(You are loved)

Don't give up
(Don't give up)
It's just the weight of the world
(You are loved)

Don't give up
(Don't give up)
Everyone needs to be loved
(Don't give up)

You are loved
(You are loved)
(Don't give up)