Busy Day

From Chase's Journey

It was a big day for us. First, Chris and I gave Chase a bath. He wasn't such a fan of bath time today, and Chris and I wondered what we were doing wrong. But the nurse assured us we were doing fine. But I think Mom and Dad can definitely use more practice, that's for sure! After we got him all clean and dried off, we changed out his trach. This was the first time I actually inserted the new trach, and it was a little scary at first. The whole process is pretty tedious and definitely takes two or three people to hold Chase, hold the trach in place, and clean his neck. But it does get a little easier each time. OT came next, and she tried him out on the bottle. He did great and took in 15mls over 15 min, which is up from the 6mls he took a week and a half ago. So more progress! :) But then he threw it all up when she put him back in his bed and suctioned him :( Tomorrow when they try it again, they're going to hold him upright longer before putting him back in his crib and before suctioning him to see if that helps. And finally, we had our care conference with the physicians, nurse, OT, discharge planning, and social work. My sister Elizabeth the journalist sat in and took excellent notes. This was a huge help because so much was discussed and we didn't have to worry about writing everything down. Plus, it was great just having her there. I'll try to summarize our meeting. We mostly discussed Chase's feeding and nutritional status. They're really encouraging the G-tube (in the belly), but we decided to wait two more weeks to see what progress he makes with the bottle. It sounds like it's inevitable though. Chase's nose would have to grow big enough to put a more sturdy NG tube down his nose, or he would have to be able to drink the 55mls from the bottle in order for him to go home without the G-tube. It could happen though...we're thinking positive thoughts. The main thing is that Chase continues to grow and gain weight. We also discussed his respiratory status. He still has alot of secretions and is requiring about 25% oxygen. They're thinking about trying him on CPAP (continuous positive air pressure) to open his lungs more and help him clear his secretions better. We talked about his condition (chondrodysplasia punctata or CDP) some as well. With this condition being so rare, they don't know what issues are due to prematurity or due to the CDP. The genetic tests they ran a month ago still isn't back yet, and it could still be several weeks before we find the results. They think it is an x-linked recessive gene type of CDP, basically meaning I'm a carrier and he inherited it from me. I would have much rather preferred to pass on some of my other not so good genes, like my Hodina nose or Sherman toes. They won't know for sure until the test comes back, and even then they may not know for sure the type of CDP.
It was so great sitting down and talking about the plan. We feel like we know and understand better what's going on. So I'd say it's a hot fudge sundae kinda day! :)