We made it through another long day at Fletcher Allen Health Care getting Pamidronate infusions. The boys are getting these in hopes of increasing their overall bone health and, hopefully, avoid breaks. The boys have each had a couple of broken bones but we truly have been lucky in only having a few compared to many kids that suffer multiple breaks. And, all the breaks we've had have been before we started the infusions.
Anyway, once again it took us longer to get the boys ready for the day, up in their chairs and out the door but we made it to the Children's Specialty Center by 9:50 which was only 5 minutes past my goal :) We had to wait a few minutes before we were called back, but not very long. Vitals taken and weights recorded and then we went and settled into the infusion bay.
We got Casey onto the bed and comfy. He certainly had his moments of grumpiness and loud vocalizations but he also cooperated and read some of the Spark notes on My Sister's Keeper with me. The child life specialist also came and spent some time with him chatting and changing the TV and movies. We all had our turn entertaining him!
Colin stayed in his chair but next time we'll get him out so he can be repositioned better. He gave us a lot of "ows" but mostly because he didn't like that he had to keep his arm as straight as he could. the nurses got right to warming up both boys arms with hot packs and towels. The IV nurse got his vein on the first 'pick'! She drew the pre-infusion labs (calcium and phosphorus) and also Vitamin D that I had requested since we've upped the boys daily dose in hopes of getting their levels up.
Dr. Zimacas came in and I updated him on the boys diets/supplements. He'd like them to be getting more calcium so I'm going to ask our nutritionist to sit down with me and work on the boys diets. It's been about almost two years since we've taken a detailed look at everything. The boys nutrition labs have been good so I'm not wanting to change much but I'm sure it will be good to go over everything again.
Both boys were examined by Dr. Z. May need to get an ultrasound of Colin's 'package' but he said it's low on the priority list and not to worry too much. We may need to look at jump starting Casey's puberty but we've still got time so nothing to do in the short term.
We will schedule the boys for a dexascan next time to see if we can get a picture of their bone health. Years ago we had them done and the results were not very valid. With Casey's fusion hardware and how we positioned Colin they didn't get great pictures. This next time we'll look at different areas to scan on the boys and hope we can get a baseline so that when we're done with our two years we'll take another scan and hopefully see that we've been making a positive difference. Of course, not having any future breaks will be the real test, and the best reward!
All in all, everything went pretty smoothly. Casey got pretty chokey and full of secretions at the end and Nancy had to trach suction him several times. Next time we'll bring up our cough machine or order one from respiratory. MAYbe we'll have the new, portable version and it will be easy to carry instead of having to bring the big ole honker on the luggage rack. I gave Dr. Lahiri a list of things to put on a script for the Respironics T70 Cough Assist. I've been waiting for the branch manager at our Apria to look into getting one but I don't think he's looking very hard. If he has the script from the doc he'll have to start doing some fancy footwork, I hope.
We got home at about 3:30--took awhile to cough Casey in the valet parking area and get them loaded up and on our way home, but we did it!
Casey clicked some channels in the yellow room for a while. Colin went right to his mattress with a big "AAAHHHHHH" and has been happy with his shows. Brooke is here for the evening so she's wii-ing with the boys. Colin is intent on watching and Casey is spacing out watching some football and being very quiet. Casey seems to be affected a bit more by the Pamidronate than Colin. He'll be back to his feisty self in the AM.
Sorry no pics! I could have taken some with the ipad but didn't think of it until now :)
