We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
It's been an interesting past 6 days. Early Sunday morning the tough guy flying was quickly grounded and screaming through severe head pain as his eyes bulged once again. Kelptyn's BMT doctor was a hero as usual and admitted Kelptyn to the hospital to give him pain meds right away. I'm not sure anyone can fully explain why Kelptyn's body had yet another ICP episode, but today he is seeming more like himself on a higher/stronger steroid dose. This is not a long term solution, but we've had many experts weigh in this week on his case and we have decided to continue with an extremely slow steroid wean to see if it buys Kelptyn enough time to get through his rapid brain growth period (maybe that's why they call it the "Terrrible Twos") and give his skull some time to catch up as he remodels bone.
We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
4 Comments
Aunt Tinker
6/28/2013 09:11:40 am
Another lesson from our shining star. We pray for you Matt and Sarah as you ride this roller coaster. The inner strength and belief in your son goes way beyond inspiration for us all. Our love and prayers are wrapped round "the mighty Grahams" love Tink and Paul
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L&L Grandma Debbie
6/28/2013 09:18:10 am
Amen Amen Amen!!! God is so awesome.. You guys are in my prayers.. I love you ...
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Auntie Rachel
6/28/2013 02:25:37 pm
Carry on he will... So amazing to see his strength he gets from his mama and dada. So glad our nerves can rest a little easier tonight. Love yous!
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Aunt Nancy
7/2/2013 05:15:21 am
God love him and his infectious smile. i'm sure he's back home slamming doors and laughing, he is truly a blessing...
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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