Day 106 on the Road to Recovery…
Sophie’s recovery thus far has had a few ups and downs, but overall she is truly one amazing fighter of a kid. Post-surgery, we remained in the Pediatric ICU for 11 days, with an additional night on the regular pediatric floor. During that time period, Sophie recovered remarkably well; so well in fact that many of our nurses were absolutely shocked to see her walking the halls less than 24 hours after her operation. This was ideal, as our surgeon stressed the importance of movement and getting up and out of bed post-surgery to help speed up the recovery process.
Each day after surgery, Sophie received visits from a variety of doctors, such as the surgical team, oncology team, anesthesiology team, nurses and nurse practitioners, as well as OT and PT therapists to aid in her progress. It was a bit overwhelming at first to have such a large amount of attention placed on us post-operation (only 5 PICU beds in total, with one designated nurse on call for us at all hours of the day) but also pretty unbelievable to see so many people rooting for Sophie each step she took and each milestone she reached over the course of our hospital stay.
Sophie is one tough, stubborn kid.
On our 8th day post-surgery, we received an enormous surprise; Sophie had surpassed each of the milestones required to be discharged, and they were going to sending us home. We returned home in the early afternoon, in less than 3 hours, we began to be a bit concerned with Sophie’s breathing (she had previously been on oxygen for most of her stay; routine recovery for a lung operation), which resulted in our shortest round-trip to date. Sophie was readmitted to the ICU and put on oxygen as soon as we returned. While it was definitely disappointing to go back, and difficult for Sophie to comprehend, we ultimately understood that she was still in the midst of her recovery, and needed additional days to really heal from the toll that the surgery took on her body.
Finally on Friday of last week we were discharged home permanently, and we arrived home early afternoon before Shabbos. We had a fairly quiet weekend (other than a quick MSK trip for a random fever), with a number of fun playdates for Sophie to enjoy. She is continuing to recover more and more each day through the help of some new physical therapy and lung treatments given to us specifically for this purpose. She has also been able to enjoy the last few days of beautiful weather, with a number of trips to the park, walks around the neighborhood, and “scootering” around town, which have all helped to aid in her recovery as well.
We will be starting chemo early next week, which begins the next chapter in Sophie’s journey to recovery. While final official pathology reports have not yet come back, we can unofficially confirm that our brilliant surgeon did in fact get negative margins around the entire tumor, which was the absolute best possible outcome for this large milestone!
Thank you again for the outpouring of love and support, prayers, emails, texts and phone calls we have received over the last few weeks; we read each message and absolutely cherish the amazing supportive network we know we have around us.