grace led in life

Isla started out her recovery in the PICU after surgery. I had shared in our last update that Isla's breathing dropped drastically at the end of surgery. She needed more oxygen support than usual and they needed to reverse some of her pain medication, coming out of anesthesia, in order to try to improve her breathing. Pain management, oxygen/breathing, and Isla's high heart rate were our main focuses those first few days after surgery. Isla had some atelectasis of both her lungs and some fluid in the left lung (the same side as her surgery). It was quite the constant struggle. Isla was SO swollen and struggling. There was a fine line of helping her breathing and giving pain meds for her pain. We were doing Chest PT multiple times a day to try to break up any fluid in her lung. Soon into recovery, after surgery, we realized that Isla had experienced an ileus of her GI system and urinary tract. Anesthesia and pain meds created the perfect storm that caused it. Not everyone faces this with surgery, yet it is not uncommon either. Isla felt completely MISERABLE from this. It was very stressful to try to figure out how to help her and J and I felt so heartbroken that nothing was helping Isla for days. They had to do countless treatments and procedures over the week that were really traumatizing for our sweet girl. It was extremely difficult on Isla and we have already been discussing with her surgeon and team, protocol and details about how to try to help this the next time she has surgery. Isla did improve enough to move from the PICU and move into her hospital room on the surgical floor (right by her Ortho team!) after 3 nights. Isla had one JP drain from her surgery and a "wound vac" - these both were removed on recovery day 6. We were so grateful that Isla's incision looked well and the VEPTR side of recovery was progressing well. (This was our greatest concern! Little did we know she would face other obstacles in recovery). Another issue Isla faced was aspiration with liquids. During Isla's second VEPTR surgery, she had had a vocal cord paralysis injury. Over the years she has been slowly improving from this injury and had great help from her OT that had training for feeding therapy. Sadly, it seems Isla faced a regression of this injury during this surgery. Isla has torticollis of her neck that is due to fusion of her cervical vertebrae. Due to this angle of her neck, intubation can be difficult and during surgery, the tube from intubation presses on her left vocal cord. During Isla's hospital stay we witnessed her having small aspirations soon after surgery and they were increasing as she was switched from IV meds to liquid meds orally and with trying to eat or drink. She ended up having a couple of scary events by the end of the week that proved the vocal cord injury was having issues again. It was really scary, the nurses and NPs were so great to quickly step in and we praise God x-rays showed our girls lungs were ok.