I don’t usually title these posts until long after they have been written and proofread at least 10 times. I also don’t usually think of a theme for my posts. Usually, I just start writing and it all comes together.As I drove back home to the boys after leaving Riley and Dave at the hospital I had an overwhelming feeling that kept creeping in to my thoughts. I was torn.
Riley was back to moving her limbs in frustration. Needing Ativan to calm her from her frustration not just sickness agitation. And then this morning she sailed through PT/OT with possibly the best reports we’ve had so far. She also slept afterwards in the most comfortable, relaxed positions we’ve seen her in.
I met with the reps from the home healthcare agency and put in to action everything we need to do to get Riley home and yet, we just don’t feel she is ready. Our feelings are not alone. The nurses we deal with daily agree that perhaps Riley needs a little more time, some time to make up for those lost days to get meds and feeds all figured out before we’re thrown back to reality. Not that living this nightmare the last 2 ½ almost 3 months hasn’t become our reality but, back to our home life reality.And then I thought about the decisions we make daily for Riley. Give her Tylenol, hold the ativan, go ahead with her feed, hold her feed, delay therapy until the afternoon, bath time now or later and I realized we’re always torn on making the right move and doing the right thing.
When I left today I cried. For the first time in a very long time I knew that when I left Riley would miss me. She had just been fed and I leaned over to tell her I was meeting daddy in the parking lot and going home to the boys. She opened both of her eyes and looked right at me letting out a squeak. And I was torn between the two worlds we live in right now and my desire to be two places at one time. Our nice nurse reassured me that she would be ok as I told her how I felt.
This weekend we were able to go to the Laker game while Grandpa Hopper stayed overnight with Riley and my parents watched the boys. It was a night full of laughs that we needed. Jason, our friend (ok Dave’s friend first but, we’re all friends now) drove out from Vegas and Hans (the one person I can thank for Dave and I making it through dating) came to the game with us. When Jason showed up at our house with his Team Riley shirt on and then proudly wore it to the game I was barely able to hold back my tears. Saturday, before Jason headed back to Vegas he went with Dave to visit Riley. I know he’ll kill me for saying it but, it was one of the nicest gestures someone could have done for Dave. To make the detour and add on an extra hour to his drive home really meant a lot to both of us.
Saturday while Dave headed back to Riley I stayed behind with the boys and started to get ready for Riley’s homecoming. I was planning on driving up to Vegas to attend a wedding but, again I was torn. I really needed the time to get our house in order. This meant cleaning out closets and moving Riley’s crib to her new room, our old den. As I stared at the empty space next to Mason’s crib I could only feel great hope and thankfulness that Riley’s crib was just in another room and not gone forever. We’ve been reminded and it is always in the back of our minds that this may have never been.So, we’re moving forward with plans to bring Riley home in 14 days. Will it be 21 days or 30? We don’t know now as discussions with case workers and insurance companies must be done however, we do know that within the next month Riley will be back home with her family! We worry about the adjustment for everyone. How will we deal with a nurse present in our home 24 hours a day and still maintain our family vibe. Do we really need 24 hour nursing care? What will be provided? All questions we hope to find the answers to over the next 2 weeks.
We also need to get Riley’s therapies lined up. If all goes as planned (not sure anything does really) she’ll have each discipline PT/OT/ST 2-3 times a week at home. This would be ideal. Most of my questions today for the home health folks centered around the qualifications of the nurses and how willing they would be to adapt to our “normal” family life. Ideally, I’d like to run errands, do preschool drop off and continue our life with a nurse in tow. We’ve been so lucky to have Hannah who just clicked with our family and I need someone who will click with her and us. So we’ll interview and try to pick the best group of nurses for our family.Each part of this journey has been difficult for different reasons. We hope bringing Riley home at whatever date it is in the near future is the right decision and is right for Riley and our boys. We’ve balanced this hi/bye in the parking lot and have gotten used to switching off nights at the hospital. Coming home is another unknown and is unsettling because it isn’t the norm we’ve grown accustomed to.
As I’ve said before and will say a million times over, change doesn’t sit well with me. Please send your prayers, thoughts and good wishes that we make the right decisions. Riley still needs them as well. For every good day there is a bad day and we’d love for the good to outnumber the bad!
Dave, Megan, Logan, Mason and Courageous Riley!