Monday, January 5, 2015

Second Round of Bone Infusion

It is time for Brayden's second time with the Pamidronate bone infusion.  He has been started on this infusion, to be done every three months for an indefinite amount of time.  Brayden's bones are very soft, as the doctor said, "like butter".  He has had several problems with bones breaking and not healing.

Brayden was taken off the ketogenic diet, given supplements and started bone infusion.  It will take time to see real improvement.  But for now, he has not had any broken bones for several months (at least that we know of, he had fractured vertebrae that we did not know about).

Time for the second infusion.

The day did not start very smoothly.  About an hour in to our drive (Children's in DC is not that far but morning traffic makes it a long drive) to arrive for 8:00 a.m. check-in time, we got a frantic call from the gal that runs the clinic.  The infusion schedule was over booked, by a lot, could we come back another day?  I tried my best not the freak out on her.  We had been up, getting Brayden ready to go, since 5:00 a.m.  Jeremy (thankfully was not on travel) stayed home to get Carter and Luke off to school.  And I coordinated other appointments based upon this infusion.  I begged her to fit Brayden in.  All she could offer was to drive in and we could see if they find a space for Brayden to get the infusion.

Thankfully we arrived before most of the others on the schedule so Brayden had a bed (we eventually had to share a tiny room with another patient).

Then the waiting begins.  Waiting for the pharmacy to prepare the pamidronate.  Waiting for the IV team to arrive.  All was finally ready.

The pamidronate infusion was started...and Brayden started to cry and SCREAM.  They immediately thought the IV line went bad, which is something quite typical for Brayden.  We waited for the IV team to come back.  They fiddled with that line and thought it should work.  The infusion was re-started (hours after being there).  Brayden finally went to sleep.  The infusion team comes in every 45 minutes or so to do the vitals and check things over.  About an hour into the infusion, the nurse comes to check, she pulls back the blanket to check the IV, then dashes out of the room.  I knew something was not right.  I rolled back the blanket to look at Brayden's arm (I sit in the bed with him), it was gigantic and hard.  It looked like a fake wax arm.  Obviously the IV line went bad and the pamidronate was just being pumped right into his arm.  The team came back in and pulled back on the line to see if they could removed any of the fluid and waited to hear from the pharmacy.  Thankfully the pamidronate would eventually be absorbed by the arm tissue. 
The infusion was on hold again.  The IV team came back to do another IV line, this time in the other arm.  The infusion was started again.  Did I mention the infusion takes about 4 hours being hooked up to an IV, pumping in the medication? 
Brayden's bad arm was still very swollen, it had to be elevated and with a heat pack.  After all the mess, he went back to sleep.

What a long day.  Finally the infusion was completed.  Now time to head home, watch for the side effects of the infusion (fever and possible seizures) and his swollen hand.

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