IVIG Day Two
Day Two...check!
We arrived for a later appointment today- can't remember if I mentioned this yesterday, but Hunter is actually receiving his infusions in the Cancer Center for Children. Tuesdays are heavy days for them, so we started at 9:30 this morning. Just seeing all these little cancer patients...breaks your heart.
Hunter took his oral pre-meds like a champ, got a new surprise (Daddy picked out a new toy to give him per day), and the nurses came in with the IV pole. It was started slow again, and then ramped up to 52 for the remainder of the day. We requested that they keep the same drip speed as yesterday, since he tolerated it so well. We had both cleared our morning work calendars, so sitting there longer to avoid any adverse reactions suited us just fine.
Then our day got a little more eventful...as Hunter was eating his lunch, he said, "My tooth fell out!!" We both looked up to see a bloody mouth and an incredibly big gap. That tooth fairy is going to visit tonight and leave a little money under his pillow, and sprinkle him with some of her own magic. We all know the Tooth Fairy carries a Magic Wand, right?? ;)
Day 2 infusion started around 10:30, and we finished by 1:20. A little under three hours from start to finish for the drip...and he rocked it again. I am so happy the initial nurse suggested wrapping his hand at night to avoid having to restick in the morning. Originally, I was worried about infection, but the infection risk from a poke was greater than covering his IV. Our son, who hasn't worn a pair of pants yet this cold winter because he doesn't like things on his skin, and rolls up the sleeves on long sleeve shirts and jackets allowed this IV to remain in his hand and wrapped with gauze. We call it his cast.
Day 2 began with less nerves than Day 1. I knew he was going to tolerate the infusion, and now we just wait to see if it works. From what I have read, some patients get worse before they get better. Peter and I told ourselves to just expect a bad first month post. If that doesn't occur, we will count our blessings X100.
Even though I have told myself that I cannot expect an immediate change (I mean, he has had brain inflammation for three plus years!!), I keep looking for little signs. Did he hold his eye contact longer? Did you see the way he used referential eye contact just there? I turned off the TV and he didn't hit me! He ran to give Peyton a hug after school and show him his new plane- awesome!!
But those things could have happened on any other day, too. We have come a long way over the past three years. He did crawl in bed with us after waking early this morning (5:45), but then he got up and did his traditional rummaging through all of our dresser drawers and closet bins to find an electronic device. OCD still there, alive and present. He hit me after I took away the tablet at dinner time- aggression still there. He told Peyton several times about his new plane, while flapping his arms- Repetitive behavior still there.
So instead of looking for immediate signs of change, I look for signs of things to come.
My friend Brynn sent this to me the first day of treatment, and it was perfect...
Peter had this picture come up on his news feed, and Peyton brought home this art project from school. My grandma Maggie loved cardinals, and we have seen them throughout our journey as well.
When the boys and I got in the car this morning to head to the hospital, the song that came on the radio? "Help Me Find It." Let me tell you, Peyton got the biggest smile on his face and started to sing along. There is nothing that warms the heart more than hearing your children sing praise music.
My cousin Anne sent me a link to the praise song, "Whom Shall I Fear."
The God of Angel Armies is always by my side.
And nothing formed against me shall stand.
You hold the whole world in Your hands.
I'm holding on to Your promises. You are faithful. You are faithful.
http://www.youtube.com/watch?v=qOkImV2cJDg
My friend Lindsey sent three beautiful songs-
Kari Jobe "Healer"
You hold my every moment
You calm my raging seas
You walk with me through fire
and heal all my disease
http://www.youtube.com/watch?v=Yzejd6r9DwE
Beautiful Things- Gunger
Could all that is ever lost ever be found?
Could a garden come out from this ground at all?
You make beautiful things. You make beautiful things out of the dust.
All around, hope is springing up from this old ground.
Out of chaos, life is being found.
http://www.youtube.com/watch?v=OR7VOKQ0xJY
Overcomer- Mandisa
Whatever it is you may be going through
I know its not going to get the best of you.
You're an overcomer! Stay in the fight till the final round.
you're not going under.
Cause God is holding you right now.
You might be down for a moment, feeling like its hopeless
But that's when he reminds you,
You're an overcomer!
http://www.youtube.com/watch?v=z29olPjFbqg
So keep on sending the signs! It has been cold and rainy the first two days of treatment...looking for that sunshine when we leave on Thursday.
We arrived for a later appointment today- can't remember if I mentioned this yesterday, but Hunter is actually receiving his infusions in the Cancer Center for Children. Tuesdays are heavy days for them, so we started at 9:30 this morning. Just seeing all these little cancer patients...breaks your heart.
Hunter took his oral pre-meds like a champ, got a new surprise (Daddy picked out a new toy to give him per day), and the nurses came in with the IV pole. It was started slow again, and then ramped up to 52 for the remainder of the day. We requested that they keep the same drip speed as yesterday, since he tolerated it so well. We had both cleared our morning work calendars, so sitting there longer to avoid any adverse reactions suited us just fine.
 |
| the gap is as big as that carrot!! |
Day 2 began with less nerves than Day 1. I knew he was going to tolerate the infusion, and now we just wait to see if it works. From what I have read, some patients get worse before they get better. Peter and I told ourselves to just expect a bad first month post. If that doesn't occur, we will count our blessings X100.
Even though I have told myself that I cannot expect an immediate change (I mean, he has had brain inflammation for three plus years!!), I keep looking for little signs. Did he hold his eye contact longer? Did you see the way he used referential eye contact just there? I turned off the TV and he didn't hit me! He ran to give Peyton a hug after school and show him his new plane- awesome!!
But those things could have happened on any other day, too. We have come a long way over the past three years. He did crawl in bed with us after waking early this morning (5:45), but then he got up and did his traditional rummaging through all of our dresser drawers and closet bins to find an electronic device. OCD still there, alive and present. He hit me after I took away the tablet at dinner time- aggression still there. He told Peyton several times about his new plane, while flapping his arms- Repetitive behavior still there.
So instead of looking for immediate signs of change, I look for signs of things to come.
My friend Brynn sent this to me the first day of treatment, and it was perfect...
Peter had this picture come up on his news feed, and Peyton brought home this art project from school. My grandma Maggie loved cardinals, and we have seen them throughout our journey as well.
Our friends made "rainbow" bracelets, indicative of the sunny days ahead.
My cousin Anne sent me a link to the praise song, "Whom Shall I Fear."
The God of Angel Armies is always by my side.
And nothing formed against me shall stand.
You hold the whole world in Your hands.
I'm holding on to Your promises. You are faithful. You are faithful.
http://www.youtube.com/watch?v=qOkImV2cJDg
My friend Lindsey sent three beautiful songs-
Kari Jobe "Healer"
You hold my every moment
You calm my raging seas
You walk with me through fire
and heal all my disease
http://www.youtube.com/watch?v=Yzejd6r9DwE
Beautiful Things- Gunger
Could all that is ever lost ever be found?
Could a garden come out from this ground at all?
You make beautiful things. You make beautiful things out of the dust.
All around, hope is springing up from this old ground.
Out of chaos, life is being found.
http://www.youtube.com/watch?v=OR7VOKQ0xJY
Overcomer- Mandisa
Whatever it is you may be going through
I know its not going to get the best of you.
You're an overcomer! Stay in the fight till the final round.
you're not going under.
Cause God is holding you right now.
You might be down for a moment, feeling like its hopeless
But that's when he reminds you,
You're an overcomer!
http://www.youtube.com/watch?v=z29olPjFbqg
So keep on sending the signs! It has been cold and rainy the first two days of treatment...looking for that sunshine when we leave on Thursday.
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