UPDATE (5/16/13)
Today was a pretty fun day….fun and relaxing. Leah and I were able to spend the entire day together and worry about nothing but us and Beckett (sounds selfish, but it was awfully therapeutic). Though today was a blend of some struggle and enjoyment, it was fulfilling to spend it with my family.
The struggle or frustration was that Beckett was definitely displaying further signs of withdrawal throughout the day and slowly increased his oxygen support. We advocated for some pharmacologic assistance, and they accommodated our request. However, usually when the request is made, it’s already a little too late by the time it’s administered or delivered.
With that being said, he did sleep for a while this afternoon while we held him and watched a movie together on my laptop. Leah and I joke about how much I enjoy it when Beckett sleeps. I assimilate it with healing. Sooo, as he sleeps I find myself randomly whispering “heal, heal”. Its kind of creepy, but kinda funny. Lately when he’s been sleeping, his saturation levels begin to rise and in return he usually can come down some on his oxygen support. I’m weird, I know…but I just blame it on how much I love my son.
We were informed today that in lue of how difficult the past few days have been, we probably aren’t going to be coming off of fentanyl tomorrow. It was a valiant effort, but possibly too aggressive to try and wean TWICE this week without increasing his methadone. I understand why it was tried (and everybody had mixed feelings about it), but the age-old phrase “if it ain’t broke don’t fix it” kept making its way into our conversations. Oh well, he’s doing ok….he just may have been pushed a little faster than he typically likes. We call it “Beckett Speed.” It’s the speed that defies what “the books” declare as “slow”…it’s a new level of slow. 😉
But like I said, for the most part it’s been an enjoyable day, but not necessarily seamless for Beckett. We are getting close though…and are continually thankful for the care we are receiving here at Riley. No hospital is perfect, but we appreciate the love and care Beckett has always received at every hospital we’ve been to.
“Thank you God for staying near to my son. Please continue to heal his precious little body. Thy will be done…we trust you entirely!”
#GoBeckett
#ODAAT
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
Heart of Beckett 
Fun is good and so therapeutic not only for you but for Beckett too. 🙂 sorry to hear that today was somewhat tougher for your sweet little boy. He is obviously one strong and courageous little guy. I oversee or secretarial team at or church and at the secretarial meeting today we had special time of prayer for Beckett and you and Leah. “Lord please hear our prayers for Beckett and perform a miracle of healing for him. And bless his family as they continue to trust and rely on you and place their son in your loving care.”