When the doctors met with us three days ago for what we thought was a normal care planning meeting, Tyler’s ICU attending doctor blindsided us by telling us our son needed a miracle. He told us how diseased Tyler’s lungs and other organs were. He recommended a Do Not Resuscitate (DNR) order and told us to get family here to say their good-byes as soon as possible.
He apologized that the intubation had to happen emergently, therefore robbing us of what was likely our last chance to communicate with Tyler again. He said Tyler really needed a bronchoscopy, but a bronchoscopy would almost certainly end his life. He stressed that Tyler was maxed out on his ventilator settings and that there was nowhere to go. In addition, he said, it would only take a minimal crisis event such as a shift in body weight, a cough, or urge to vomit to end his life. Short of a miracle, he told us Tyler would not make it through the weekend. All of our immediate family gathered that day and each spent time at his bedside, crying and saying last encouraging words to him. I can’t describe the horror of that day.
As we were trying to prepare for the unthinkable, Tyler remained stable. As the hours, mornings, afternoons, evenings and nights passed, little glimmers of hope came our way. His vent settings were able to be adjusted down slightly. The dialysis machine started pulling large amounts of fluid off his body. 24 hours after the meeting, Tyler tolerated a bronchoscopy. His liver levels improved each day, and his kidney levels are finally starting to improve as of this morning. Yesterday he tolerated being shifted in his bed several times without a serious respiratory event. Last night they bathed him and cared for skin breakdown on his back, and he tolerated this as well. He can endure lung suctioning, oral suctioning and mouth care without a respiratory event. His head to toe rash is almost completely gone. The swelling in his arms and feet is noticably diminishing, and his blisters are improving. The fact that more fluids are coming off him each day is a sign that the defibrotide is successfully stopping his capillaries from leaking so much fluid as well as a sign that the CRRT is working. The more fluid that comes off, the more nutrition he can receive.
For a boy who was not expected to make it through the weekend, we’d say he’s doing pretty well!
As his other organs heal, his lungs are still a major concern. Please pray for that miracle to heal his lungs from the Idiopathic Pneumonia. The treatment lasts 24 days, but he really needs to come off the vent before then to avoid permanent lung damage. And also, while all this is going on, we’re praying for the success of his bone marrow transplant. Now is the time when his new immune cells should be killing off any remaining leukemia cells. We’re not sure how his present health crisis affects that process. To survive all this only to have his leukemia return would be unthinkable. Your prayers are availing much! We cannot thank you enough!