The babies’ third Pamidronate infusion went more smoothly this time. I think I know better what to expect now, and more importantly, I know THEM well enough to know when a cry is just a cry and when it is more serious. I went into Tuesday a little more relaxed than at the end of December.
For those who are just finding this blog, both of my babies inherited from me a brittle bone condition called Osteogenesis Imperfecta. They are Type I, the most mild type and will not have any skeletal deformities. My Twin A has broken each femur once, and my Twin B has also broken each femur once, plus her tibia, humerus, ulna, and skull. They are receiving a bisphosphonate via IV infusion called Pamidronate, which helps to strengthen their bones. They have these infusions every eight weeks for now, and as they grow up the frequency will gradually decrease. So far, it has been a miracle drug for us, although they still could fracture at any time.
Anyway, we traveled to Omaha for this appointment. Omaha, Nebraska has a children’s hospital with an actual dedicated OI clinic–the only one in the country, I believe. We found out about it when our babies were about a month old, thanks to FB, and they have been receiving care there since the end of October. They have an infusion center there, which is where Pamidronate infusions are administered. I walked into the infusion center and immediately saw four or five young children with no hair, clearly receiving chemo. That really puts our situation into perspective. Across the hall, a mother was questioning a nurse about what type of chemo her bald daughter was receiving that day. Later they had to switch rooms because a smell emanating somewhere near their original room was making her nauseated. Seeing all of this was heartbreaking. When my babies received Pamidronate the first time, they were inpatients. The second time, we were in the Kidney Department at our local children’s hospital, and we didn’t see any other kids there that day. Tuesday was a stark contrast.
Our babies were champs this time about having an IV placed. Violet was less than thrilled (can’t say I blame her!), but settled down quickly.
Layla did not even flinch when her IV was placed! Brave girl!
The infusion takes about three hours and 15 minutes to run, plus another 15 minutes to flush out the IV. During this time, the babies hung out on the bed together, sat in their bouncy seats, and napped.
After their infusion was complete, the nurse removed their IVs, and we were on our way home! They’ll return for their fourth infusion toward the end of April. We are lucky that this medication is available!