A day filled with many questions and some answers. In just starting this update, I’m already convinced I will not be able to cover everything that went on today, but I’ll obviously try to hit the highlights.
I had many different conversations today with multiple Cardiologists, a Dietitian, numerous nurses, etc etc….to figure out where we are (with Beckett), where we are going, and how do we get there (sound familiar?). I expressed concern that I didn’t feel like everyone is on the same page. I used the example that our Cardiologist expressed an opinion last Friday to slow down on the volume of Beckett’s feedings, yet the very next day the team decided to increase his feedings! I also feel that since Beckett doesn’t appear to be as “serious” (or critical) as he pretty much has been his entire life, that his care (or at least the planning) is not driven, focused and intentional. Yet another week has gone by, and we feel that we have very little to show for it. It is really frustrating, and it seems like whenever we ask to speak with someone about all this (or even something more specific), we are always speaking to someone new, or (no offense) a student or resident; we’ve learned that we have to be intentional in asking to speak with someone specific (like our Cardiologist). So that is exactly what I did today, and we arrived at some answers.
Long story short (because there are many details), we are officially going to do his GJ-Tube tomorrow! Though he is not officially scheduled (he’s an “add-on”), we are prepared to go down this road. A GJ-Tube will hopefully lessen Beckett’s reflux (sooo, less of a chance of choking or aspirating), it’ll give his stomach a break, but it’ll also put him on “continuous feeds” (24 hours a day….just nice-n-slow). This hasn’t necessarily been presented to us as “THE solution”, but rather a “solution” (emphasis/quotation on solution). We are going to try this and hope it helps…it’s not a guarantee, but it fits what I’ve been begging for: forward progress. I feel like we’ve been sitting on our hands for so long, that at least now we are actively doing something tangible.
Like I said earlier, there were a lot of other details I’m missing (like double checking his digoxin level and even a 12-Lead EKG because of some funny heart rate issues from earlier this morning). But with all that being said, we are taking a step forward tomorrow (a step of faith), and trusting that God will continue to lead us.
On a more fun note, we’ve tried taking his therapy into our own hands a little (since we can’t seem to get that message across to them as well….that we want continual PT, OT , & ST for him). Our nurse suggested an ExerSaucer (I had no idea what that was) and we even tried his Bumbo…..and he did both without us helping to hold him up!!!!!! It was awesome! #GoBeckett! I have a video I may try to post….but I’m not sure it turned out the greatest.
That’s about it. One day at a time (#ODAAT). Please continue to pray for Beckett’s complete healing and our patience. We really do love our care we are receiving here at Riley (and everywhere we’ve been for that matter), but at times we just need some extra grace and understanding while also trying to protect and defend the exceptional care for our son. We may have sounded harsh as of late, but I promise it doesn’t fully/accurately reflect our gratitude for all that has been done (and is being done) for Beckett. Amen.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
As always standing beside you and lifting you all up to our Lord. Praying and praying.
Thanks for the details it so helps us to know how to better pray. Continually praying…God brings Beckett and your family to my mind many times daily and each time I pray.