Jakobe had a good weekend. Throughout the day on Saturday and Saturday night, Jakobe's health improved significantly. That is, his secretions were back to almost "base line" and his breathing was managed by scheduled meds and nebs alone. Albeit an aggressive med and neb regimen. Considering his improved health, yesterday (Sunday) mid-morning we performed another trach change that included keeping the trach out for a period of 7 minutes. This 7 minute window is significant in the fact that when, not if, Jakobe decanulates (trach comes out) again,we have a longer window of time to respond and thus greatly improving Jakobe's odds of survival; essentially granting 7 minutes to get a trach back in to prevent suffocation from the inability to breathe from his only 1 airway.
Coupling the prognosis of overcoming 2 bacterial infections and another trach change reflecting a successful stoma site revision, we were discharged from PICU yesterday afternoon.
Today per Nurse Dawn's assessment, Jakobe is at "almost base line" and currently taking a nap. 3.5 hours and still napping.
Unfamiliar with medical special needs, Heidi and I could not have anticipated the significant level of care Jakobe would require. Nor could we have fully comprehended the "life and death" implications that comes with a medically fragile and tech dependent child. However, neither could we have anticipated or comprehended the depth of love and bond that comes with his needed extra care. Given the opportunity to be his mom and dad, we are the lucky one's.
Today we rest. We rest our bodies from the rigors of PICU life. We rest our minds in and with the assurance each of you are here with us. We rest our hearts in the promises of the Creator.
Tomorrow we rise. We rise for a day of nurturing. We rise for a day of growth. We rise for a day of living fully into who we are because of whose we are; and that is Christ's.
We invite you to do the same.
Your posts nourish us. Your prayers sustain us. We feel your love. Thank you for keeping us close to your thoughts and deep in your hearts.
Peter, Heidi, and Jakobe