We've been busy catching up on life and getting Riley set up for her many doctor's appointments, follow up visits and therapies. I never knew how much time this was going to take. I think I spend half of my time in the office trying to get the next week scheduled for Riley and trying to make sure we have everything taken care of! I'm exhausted.
We need to figure out in the next week or so how we proceed with the nurse staffing as well. Ideally, we'd love to keep 24 hour care but, we'll only be covered for 16 hours a day. We'll cover the additional hours for the next couple of weeks but, we'd like to slowly get down to just the 16 hours that we have coverage for eventually. It's so hard trying to decide which hours to keep and which hours we'd be willing to give up. Monday night due to scheduling issues we were without a nurse from 10 pm to 6 am. It wasn't really that bad of a night but, it's pretty hard to actually sleep when you're worried about a monitor going off or something going wrong. Add in random Mason wakings and we know we won't be giving up that shift!
Riley is doing GREAT though. After a rough first week home she has really settled in. Her heart rate is back to the numbers we were seeing before leaving Healthbridge and she is moving her extremities with ease. She's been tolerating her passy valve multiple times a day. This weekend while I was out of town she was very vocal and I know Grandpa Hopper and Dave really enjoyed hearing her voice! The look on Riley's face when she hears it is also priceless.
Riley had her pediatrician appointment last Thursday. It was basically to get her checked out by Dr. Hu and go over her vaccines and where she stands right now. We did have them give her the pneumococcal vaccine and we'll be going back next month for some more shots!
Riley weighed in at 19 pounds 15 ounces so she's still gaining weight despite her week of puking episodes.
We've been trying to set up therapies somewhere closer to home and it's just not going to happen. Next week we'll head back to Healthbridge to check out the outpatient program they have and I'm also looking in to a center in Pasadena. Thankfully, we've had wonderful nurses who have been working with Riley daily in the meantime.
Being home as a family is wonderful and the boys, especially Logan, really love having Riley around. I can't tell you how many times we've gone looking for Logan and he's sitting in Riley's room watching cartoons with her or playing on the Ipad next to her crib.
This week Logan was able to have Grandpa and Grandma Hopper and Grammie and Pa Doug come to school with him for Grandparents Day. Friday he has a Jog a Thon and we plan on bringing Riley to watch. We'll see how it goes. I know she will enjoy being out of the house with all of us. The weather has been so windy and weird here in the last couple of weeks so we've mainly kept Riley indoors so we can protect her from the elements. Being a trach baby really causes her to be susceptible to much more than the rest of us and we don't want her to catch anything else.
Tomorrow we head to visit the surgeon to discuss Riley's fundoplication procedure. We've started using Colic Calm, which was recommended to me when Logan was a newborn, before her feeds and it has been helping. The Colic Calm along with warmer formula seems to keep her from vomiting so we're now very torn on how to proceed. We'll go to the appointment with an open mind and lots of questions and hopefully leave with a plan. We just want to be assured that Riley really needs this procedure.
Thanks for your continued support. We really appreciate it as we figure out this next chapter in Riley's life!
Dave, Megan, Logan, Mason and Courageous Riley!