Two Steps Forward One Step Backward

Day 128 (18 weeks, 1 day)
Reflections from Scott in the PICU:
We were thinking that this weekend’s post would reflect on the
preciousness of life. After all, Ethan has just competed his 18th week(his Chai Week) in the hospital. Is there significance in him receiving his Baclofen pump during his 18th week of hospitalization? What benefit will Ethan gain from this technology to help him recover and regain a meaningful life? We will wait and see — all on Ethan Time.
Instead we will provide an update of Ethan’s post surgery recovery as this has taken importance over reflection.
Ethan took two huge steps forward (Baclofen Pump and Mic-Key Button) last Thursday and one step backward Saturday night (reunion with the PICU Team).
Last night Ethan was transferred back to the PICU to better monitor
and manage his post-surgery pain. This was not the reunion with the PICU team that we envisioned. However, given Ethan spent 12 days in the PICU in July we now know the team very well and were quickly reacquainted with familiar faces. Rounds have been more like a family reunion as the same doctors rotate through to see Ethan again. We are thankful for the progress they speak of and see in Ethan since his time in the unit this past July.
After a night (with an extra hour due to daylight savings) of blood tests and scans, Ethan is resting comfortably. At this time, all tests have been negative for any serious issues.
Ethan is clearly experiencing post operative pain which has been
difficult to manage, but is getting better. He is also probably very tired of having to lay flat on his back. We hope his Neuro Surgery Team gives him the green light to recline up in bed later today.
We pray that Ethan’s time in the PICU is short and that he returns to the Rehab Unit soon. The Baclofen pump looks good and we want to begin working with his Rehab Team on optimizing its settings. We promise to come back and visit the PICU Team but under very different circumstances.
Staying Strong and Working to Move Forward,
Alexia and Scott