Last week, I took V&L back to Omaha for Pamidronate infusion #7 (for Violet) and #8 (for Layla). Layla has now received one more infusion than Violet because our local hospital made a mistake. When Violet had her skull surgery for craniosynostosis in August locally, we decided to do the 6th Pamidronate infusion while Violet was in the hospital, healing from surgery. They were due for it the following week anyway, and I couldn’t imagine bringing Violet back to a hospital for more needles after just going through major surgery.
Layla received her infusion a couple of days earlier than Violet, and it went fine. After Violet’s infusion a few days later, the staff came in and admitted that they had overdosed her on Pamidronate. She received more than three times the calculated dose, and more than half of the amount she should receive in a year. Obviously, we were livid. Thank goodness it wasn’t a narcotic or a medication that could have damaged her organs!
The OI clinic doctors decided that she should therefore skip the October infusion to balance out the amount of Pamidronate in her body. That means she went 16 weeks between infusions (August 13-November 30!). We were very afraid she would become fragile toward the end of the 16 weeks after going so long without the medicine. Luckily, she was fine.
It is getting VERY difficult (and exhausting!) to manage the girls during infusions. Oh, how I miss the days when they would hang out in their bouncy seats and allow me to entertain them! Oh, how I miss the days before they developed opinions and hospital anxiety! Don’t get me wrong–I love watching my babies grow and develop and learn, but each infusion has been more complicated and stressful. My hubby came with us for the October infusion, and we were both absolutely exhausted afterwards from chasing them around and keeping them from pulling out their IVs. There is no baby-proof area in the Infusion Center, so we had to watch them like hawks. I learned a few things from that experience and came better prepared this last time.
First of all, I brought their booster seats and lots of yummy snacks. Intermittently, they sat in their booster seats and played with toys and ate snacks. That was a godsend! Second, I finally spoke up to Child Life Specialists and requested at least one exersaucer, and they went to another floor and retrieved one. The only negative to this was that the seat swiveled all the way around, so they kept spinning in circles and getting wrapped up in the IV tubing. That was an easy fix though. Third, my dad brought the pack and play he keeps at his house, but we never needed it. My thinking was that I could place them in the pack and play with toys and let them play if I needed a rest. They will not nap at the Infusion Center (too much to look at, I guess!), so at least we had plenty of ways to contain them this time around. It helped my exhaustion level quite a bit.
We were in the Infusion Center from 10-5:30. When I was changing their diapers before heading home, I was horrified to find a bunch of blood in Layla’s diaper. A nurse quickly called the OI clinic, and they sent the diaper off to the lab to confirm that it was actually blood. Long story short, the lab confirmed that it was blood, so we ended up in the ER. After more than three hours (during which I had to entertain increasingly fussy and hungry 14-month-olds), they diagnosed it as a fissure. One of the possibilities was that it was a blood clot, so her actual diagnosis was a best-case scenario. We’ve been using cream and warm baths to help, and she’s had no more bad diapers. It was gross!
We were in the ER until 8:30, and I ended up driving home. We arrived home a few minutes before midnight, and fortunately they slept almost the whole way. It was a really miserable day for all three of us! My dad and stepmom were nice enough to come to the hospital and help me out with Violet, so that was lucky. I’m hoping our next infusion at the end of January is a smoother experience!