calming the nerves
This weekend, I have experienced moments of panic, realizing that we are so close to the reality of IVIG. I read the pamphlets, think about the initial stick, Hunter's sensory defensiveness, and I FREAK OUT.
How are we going to get him to tolerate a needle in his hand for four hours?
For those of you who asked about the process, we will check in at the infusion center Monday morning, and Hunter will be pre-medicated with Benadryl and Tylenol. Then, the Child Life team that we requested should arrive to help us distract and calm the nerves. Once the IV is correctly in place, he is free to play with his toys, ipad, watch movies (CARS anyone??), and enjoy four hours of sitting with the drip. We will go home that night, and return again the next three days, for the same process over and over.
Typically, Hunter's anxiety takes over before an unpleasant event if we warn him. For example, if we tell him the buzzer will go off in the game in thirty seconds, he screams and covers his ears. Sometimes we avoid warnings, for they seem to only contribute to the anxiety. With IVIG, we felt it was best to explain the event and hopefully calm him about the process.
Play therapy has helped this weekend. I found an organization that has books, social stories, and a bear called, "Ig-I (pronounced Iggy). The mother I spoke with has four children with immunodeficiency disorders, and she was very understanding and supportive. She told me she would send me several items- it all arrived Thursday, the same day we were approved.
We gave Hunter Iggy on Friday- didn't mention anything about IVIG, so he could "love" on this bear before he could associate any negative connotation with it. It reminded me of my brother George who had heart surgery when very little- he had a bear he named, "Nine," that became special to all of us. Iggy has followed us everywhere the past two days.
attached the tourniquet, inserted the needle
and loaded the bag of medicine.
After we read the story, I showed the calendar to Hunter and told him he would not be in school next week, but we would be at the hospital Monday through Thursday. He asked a question and then repeated- "I won't be at school- I will be gone Monday, Tuesday, Wednesday, Thursday." He gets it.
When we were inserting the needle into Iggy and wrapping his hand in his little arm cast that Hunter will wear as well (to prevent him from pulling out the needle), he stopped and asked me, "Mommy, should we change his face?"
"Why, Hunter?"
"Because he is sad that he is getting his blood drawn."
This child, who may not respond to you the first time you call his name, or look you in the eye when talking to you, gets it.
We told him that he needs to get his medicine to make him feel better, and we had to get it through the tubes into his body. We told him we would take Iggy to the hospital with us and he could do it at the same time to Iggy.
After we finished the story and the calendar, he went to the closet, pulled out his backpack, and said, "Well, let's pack my bag!"
He gets it. Are we really doing this???
He had a great day at the park, running and playing with our friends, even calling out, "Hey Garrett!Wait for me!" He had wonderful reciprocation during our Iggy lesson. But he still did ask for an electronic about 37 times and hit the TV when told no. He couldn't sit for more than three minutes at a time at the dinner table. He hit my arm over and over again when I told him he couldn't play with my phone.
We are doing the right thing.
Monday morning, we will walk hand-in-hand with Hunter to the hospital, where we hope and pray we will feel the love.
Many times I have asked God, "Help me Find it."
We are here, and we need to trust in our intuition, our faith, and our path.
We have found it.
I don't know where to go from here. It all used to seem so clear. I'm finding I can't do this on my own. I don't know where to go from here. As long as I know that you are near. I'm done fighting. I'm finally letting go. I will trust in you, you've never failed before. I will trust in you.
If there's a road, I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I'm giving you fear and you give faith. I'm giving you doubt you give me grace. For every step I've never been alone. Even when it hurts you have your way. Even in the valley I will say with every breath, you've never let me go. I will wait for you. You've never failed before. I will wait for you.
If there's a road I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I lift my empty hands, come fill me up again. Have your way, my King. I give my all to you. I lift my eyes up yet, was blind and now I see, cause you are all I need.
If there's a road I should walk, help me find it. If I need to be still give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
-Sidewalk Prophetshttp://www.youtube.com/watch?v=CsjZ94K7UQs
How are we going to get him to tolerate a needle in his hand for four hours?
For those of you who asked about the process, we will check in at the infusion center Monday morning, and Hunter will be pre-medicated with Benadryl and Tylenol. Then, the Child Life team that we requested should arrive to help us distract and calm the nerves. Once the IV is correctly in place, he is free to play with his toys, ipad, watch movies (CARS anyone??), and enjoy four hours of sitting with the drip. We will go home that night, and return again the next three days, for the same process over and over.
Typically, Hunter's anxiety takes over before an unpleasant event if we warn him. For example, if we tell him the buzzer will go off in the game in thirty seconds, he screams and covers his ears. Sometimes we avoid warnings, for they seem to only contribute to the anxiety. With IVIG, we felt it was best to explain the event and hopefully calm him about the process.
Play therapy has helped this weekend. I found an organization that has books, social stories, and a bear called, "Ig-I (pronounced Iggy). The mother I spoke with has four children with immunodeficiency disorders, and she was very understanding and supportive. She told me she would send me several items- it all arrived Thursday, the same day we were approved.
We gave Hunter Iggy on Friday- didn't mention anything about IVIG, so he could "love" on this bear before he could associate any negative connotation with it. It reminded me of my brother George who had heart surgery when very little- he had a bear he named, "Nine," that became special to all of us. Iggy has followed us everywhere the past two days.
 |
| all the materials |
Loving on Iggy
 |
| hydrating this boy like crazy this weekend to have a nice vein, as well as to reduce side effects of IVIG |
 |
| Iggy's "IVIG" kit |
 |
| Hunter's book to keep a log of his time in the hospital |
So tonight we practiced IVIG on Iggy. We put on our gloves, cleaned the arm,
Second practice round
When we were inserting the needle into Iggy and wrapping his hand in his little arm cast that Hunter will wear as well (to prevent him from pulling out the needle), he stopped and asked me, "Mommy, should we change his face?"
"Why, Hunter?"
"Because he is sad that he is getting his blood drawn."
This child, who may not respond to you the first time you call his name, or look you in the eye when talking to you, gets it.
We told him that he needs to get his medicine to make him feel better, and we had to get it through the tubes into his body. We told him we would take Iggy to the hospital with us and he could do it at the same time to Iggy.
After we finished the story and the calendar, he went to the closet, pulled out his backpack, and said, "Well, let's pack my bag!"
He gets it. Are we really doing this???
He had a great day at the park, running and playing with our friends, even calling out, "Hey Garrett!Wait for me!" He had wonderful reciprocation during our Iggy lesson. But he still did ask for an electronic about 37 times and hit the TV when told no. He couldn't sit for more than three minutes at a time at the dinner table. He hit my arm over and over again when I told him he couldn't play with my phone.
We are doing the right thing.
Monday morning, we will walk hand-in-hand with Hunter to the hospital, where we hope and pray we will feel the love.
Many times I have asked God, "Help me Find it."
We are here, and we need to trust in our intuition, our faith, and our path.
We have found it.
I don't know where to go from here. It all used to seem so clear. I'm finding I can't do this on my own. I don't know where to go from here. As long as I know that you are near. I'm done fighting. I'm finally letting go. I will trust in you, you've never failed before. I will trust in you.
If there's a road, I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I'm giving you fear and you give faith. I'm giving you doubt you give me grace. For every step I've never been alone. Even when it hurts you have your way. Even in the valley I will say with every breath, you've never let me go. I will wait for you. You've never failed before. I will wait for you.
If there's a road I should walk, help me find it. If I need to be still, give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
I lift my empty hands, come fill me up again. Have your way, my King. I give my all to you. I lift my eyes up yet, was blind and now I see, cause you are all I need.
If there's a road I should walk, help me find it. If I need to be still give me peace for the moment. Whatever your will, whatever your will, can you help me find it. Can you help me find it?
-Sidewalk Prophetshttp://www.youtube.com/watch?v=CsjZ94K7UQs
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