One long day with a boy that handled it all so well. Brayden's first bone infusion, pamidronate.
An 8:00 a.m. arrival at Children's, we arrived quite a bit before 8 because we, for once, had no traffic, and had to wait till 8:00 before Brayden was checked in. We were taken to a small room with another family, also there for infusion. I quickly realized that they did not plan for Brayden to have a bed but to be in a recliner or his wheelchair...there was no way he can sit in a recliner nor sit in his wheelchair for several hours straight.
So the waiting began. We waited for a bed to be delivered to the next room for Brayden. Once that arrived we waited for the doctor, she ordered the incorrect dosage for his first infusion. Then we waited for the pharmacy to make and deliver the pamidronate.
In the meantime, I talked to a teenager and his family that were waiting for infusion, they knew this routine. He had done it many times and was willing to answer my questions. It was probably the first time I was able to actually ask how things actually felt for the patient, not a doctors observations but straight from the boy. So I seized the opportunity and asked how the infusion felt going in, how he felt during it, after, etc. He explained that the infusion itself did not hurt, the first couple of infusions he did get a fever and aching, but nothing terrible. Brayden was given a big dose of Motrin before the infusion to help.
Then came time for Brayden's IV. Brayden has always been a hard stick, frankly this is one of the hardest things we do with Brayden. They tried to get a line and did not so they called in the IV team, a team effort and they got a good one. The first time he has had an IV in his bicep. Brayden was an all star when they were trying, he did not fuss, he cooperated and barely flinched...like an old pro.
More waiting and the medication for the infusion arrived. It was a tiny little bag, not what I expected to be given over 4 hours but was told the pamidronate is some potent stuff and goes in very slowly through his IV. The medication was started around 10:45 a.m. Brayden was comfortable in the bed. Comfortable enough that he slept for almost 2 hours of the 4 hour infusion. He had to catch up on sleep from middle-of-the-night party he had last night (wide awake for too long).
Throughout the infusion, they checked his temperature, pulse ox and blood pressure. He looked good every time.
The infusion was complete, Brayden did well. The only trouble came when time to remove the IV and the tape had to come off, he was not pleased and let everyone know it. He calmed down and we headed home around 3:30, the not so great window of time for DC...lots of traffic on a Friday which translates to 2+ hours drive home.
Brayden will continue the bone infusion indefinitely, scheduled for every 3 months. Then he will have a bone scan in 6 months to see if there is improvement from the infusions and coming off the ketogenic diet.
MORNING UPDATE: He handled everything yesterday without problem. Last night/early this morning was a different story. High fever, 102.3 which could have caused the seizures; seizure with lots of little ones in the midst of a big one that caused racing heart, vomiting and troubled breathing. Motrin, Diastat (big seizure med), put him on oxygen and he finally found some rest.