Monday

Yesterday we held a small ceremony to remember our boy Fisher. It surely seems unlikely, or even inappropriate to those unfamiliar with our exceptional family and friends, but amidst the tears and grief we found moments of laughter, even joy. It was surreal but lovely. We are nearly obliterated by the kindness of those close to us.

Truman continues to recover. His most recent x-ray showed a normal intestine., so doctors will discontinue further x-rays until Tru presents them with a reason to start again. We pray that no such reason ever appears. Our anxiety is unremitting. His present course of action is as follows:

1. More antibiotics for the next 3 days (10 days total)
2. No feedings by mouth (intravenous TPN only) for the following 4 days (14 days total)
3. Upper Gastro-Intestinal Tract X-Ray to determine whether intestinal tract is functioning correctly
4. Feedings begin
   

Tru will be in the hospital for at least another month. His current intravenous nutrition is administered via PICC (Peripherally-Inserted Central Catheter) line in his scalp. A PICC line eliminates the need for more superficial IV lines, which must be replaced frequently. These frequent replacements are annoying to the baby and come with a higher risk of infection. The first time we tried to have a PICC line inserted (Friday), a medical fellow tried to insert it in Tru's leg, with little success. Tru didn't much care for the procedure, thrashing about constantly while the poor woman tried and failed. When we were told that the line would have to be re-inserted the next day, we asked if someone more senior might attempt the procedure instead.

Enter Dr. Wong.

Dr. Wong (first name unknown) appears approximately 80 years old and walks with the slow uncertain gait of a homeless man. We'd seen him wandering the halls of the hospital and had assumed that he was a either a member of the sanitation staff or kindly older gentleman who had lost his way. He is neither. Dr. Wong was among the original proponents of CPAP and is known lovingly by the nurses as "sensei." He came to examine Truman, who did not so much as whimper while Wong searched his body for the best insertion point. "In the scalp," he said, then motioned for us to leave. 15 minutes later, Truman was good to go. As anyone who knows me is aware, I cannot resist the opportunity to over-praise the expertise of an Asian. Bravo, Wong.

As it happens, Dr. Wong was also by Fisher's side for hours on the last day of Fish's life, helping to adjust the peripheral IVs that administered his transfusions and pain meds. It was, perhaps, his sympathy for our loss that led to him to perform a procedure well below his level of competence for Fisher's brother. Again, thank you, Fisher.

Much love to all of you, who keep our heads just above the water. To Ed, J-Rob, Freedman, Socci, Gus, Arun, Sarah, Laura, Ashley, Claudia, Chuck, Kathleen, Rose, Alison, Fran and everyone at AT, sorry I left you off the last list of gratitude. I'm sure I owe a hundred more thanks than I can currently remember. We're trying to return emails and texts and phone calls, but because of your overwhelming kindness, it's taking us some time.

Thank you.