Friday, January 9, 2015

Bone infusion side effects

Just like after his first infusion, Brayden had a fever for a few days.  Which was accompanied by terrible seizures, the ugly kind (as if any seizure is pretty, but Brayden does have some that he smiles).  Brayden could not stop seizing.  Time to bring out the big medication.

He would sleep and then wake up with more seizures.  We were trying keep the fever down and him comfortable, and even trying a very long shower.

I tried calling the neurologist but could not reach her.  12 hours has gone by since the big medication and Brayden was still struggling with seizures so we gave him another dose.  I sat with him for hours, watching.  He finally found rest for the night, still with a bit of seizures but much better.  We did everything we could to avoid the ER.

Did I mentioned the mess with the weather?  Snow/sleet was pouring down, right at bus time one morning but school was not canceled.  I rushed Luke down to the bus stop, had Carter watch Brayden while he was seizing.  Luke's bus never arrived (I only waited 15 minutes) so I brought him home.  Brayden still seizing.  It was time for Carter's bus, but I was not going to leave Brayden again.  I could not drive the boys to school with Brayden in this state.  And Brayden's nurse just called, that she was turning around and heading home after driving an hour and making no progress.  I decided to keep Carter and Luke home, much to their chagrin, they actually do not want to miss school...but their disappointment was eased when I told them they could go play video games...I really just needed them out of the way so I could tend to Brayden.

Stressful day.

The next couple of days, Brayden was MISERABLE.  Really a big hangover.  Hangover from all the seizing, heavy medications, fevers, and achiness from the bone infusion.  By the evening we saw his arm, where the IV line blew, was extremely swollen and red...not good.

Of course this happens after office hours so I get to call the on-call ortho.  The ortho sounded like a young guy (and I said, "Oh, I am sorry I was waiting for the doctor"), that I had to explain pamidronate and why we had to call ortho.  His advice was to go to the ER (thus why I never want to call the on-call)...well I was not going to do that so I tried contacting others via email.  The gal that oversees the infusion clinic emailed me back.  We had to keep his arm elevated and needed to see the pediatrician, just in case.  The pediatrician did not see anything to terrible, it was just going to take time and we had keep it elevated because we noticed that when his hands were down or his was sitting up right it caused the swelling.

My poor boy.

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