I was starting to feel invincible. We haven't been admitted to the hospital for 6 months and there have been no surprise visits to the clinic. And then this morning, we woke up and Ev was hot, clammy and listless. As I sat on the kitchen floor with him (not sure how we ended up there), I was reminded more fully the battle we are fighting. And, reminded of how he looked when we first took him to Riley.
Now that it has been almost a year, we've had so many days that have been more than just tolerable they've been enjoyable. Since Christmas life has not had any emergencies, those moments when you would run out of your house with your baby in arms to get him/her whats needed...all the while not noticing that you aren't dressed or forgot to put on shoes. Moments when friends have to remind you to eat or shower.
There are always ups and downs in life, but the ups and downs of cancer attack the soul.
But, regardless as to how Ev woke up this morning, he is currently playing in the tub as if none of it happened. He seems to be ok and he is singing "Let it Go" at the top of his lungs. And, again my heart bleeds...but for the joy rather than the onslaught of pain.
Tuesday, May 27, 2014
Friday, May 9, 2014
Month 3 of Maintenance
Ev has just finished his third month of maintenance. It has gone smoothly and no backlash from the small risks we are slowly starting to take. And, we got to the bottom of "wrinkly eyes."
Awhile back I posted about how Ev will get wrinkly eyes when he is sedated for a spinal tap. Well, he doesn't like spinals (who does) and getting wrinkly eyes freaked him out. So, after talking to one of the nurses we determined that the doc sedating him needs to balance the meds differently. Either balance the med or sedate him quickly.
This past visit he was sedated quick and it freaked me out. I wasn't ready for him to go limp in my arms in 5 seconds. My heart dropped, but I can see the vitals just like the two docs and two nurses in the room with us. So, all was well, but what the hell?! It's unnerving to hold your child while they are being sedated anyway and I just didn't know going quick was an option. Ev said he had no wrinkly eyes this time, so that was great and now we have a better idea of how to keep "wrinkly eyes" away for good.
Ev continues to relax more and more. He knows now that he doesn't have to be anxious or fearful the whole time and that even though the nurses might cause him pain or discomfort that they are caring people. He'll ask me what the nurses are there for and then act accordingly.
The summer promises to be a good one...we have plans underway with Make A Wish (http://wish.org/) and Ev has done a 180 from where he was almost a year ago.
Awhile back I posted about how Ev will get wrinkly eyes when he is sedated for a spinal tap. Well, he doesn't like spinals (who does) and getting wrinkly eyes freaked him out. So, after talking to one of the nurses we determined that the doc sedating him needs to balance the meds differently. Either balance the med or sedate him quickly.
This past visit he was sedated quick and it freaked me out. I wasn't ready for him to go limp in my arms in 5 seconds. My heart dropped, but I can see the vitals just like the two docs and two nurses in the room with us. So, all was well, but what the hell?! It's unnerving to hold your child while they are being sedated anyway and I just didn't know going quick was an option. Ev said he had no wrinkly eyes this time, so that was great and now we have a better idea of how to keep "wrinkly eyes" away for good.
Ev continues to relax more and more. He knows now that he doesn't have to be anxious or fearful the whole time and that even though the nurses might cause him pain or discomfort that they are caring people. He'll ask me what the nurses are there for and then act accordingly.
The summer promises to be a good one...we have plans underway with Make A Wish (http://wish.org/) and Ev has done a 180 from where he was almost a year ago.
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