This has been another week for significant changes and events so settle back and follow along.
On Saturday, Robbie had a surgical consult regarding the fungal infection. Deb and Robbie insisted whatever was decided be done by consulting Dr. Beardsley. Well, by dinner time, the surgery was scheduled but no, Dr. Beardsley hadn’t been consulted. When she heard from Deb, she showed up at 9 p.m. and worked the phones pulling all the appropriate doctors in for a Sunday morning meeting to determine if the surgeon’s call was the right one.
On time, the doctors clustered outside his door and reviewed the scans, the blood work and compared notes. It was decided the surgery was absolutely necessary and would be done that day. Deb and Dr. Beardsley decided I should remain in Maryland to be with Kate, try to sleep and come home Monday. It made perfect sense although it was tough getting through the final day of Shore Leave while thinking about him.
Deb’s brothers Jim and John, and their wives, dropped everything and came to spend the day with her. Periodically, the anesthesiologist would bring out updates and while it was going well, they had to slow down their pace given Robbie’s low blood counts and clotting issues. Finally, it was finished and around 8 p.m., Dr. Massaro brought Deb in to see him. Deb’s oldest friend, Judy, came up to spend the night and day with her as the family had to go home and to work.
In short, they removed 30% of his lungs but we have been assured we’re born with 50% excess capacity so by doing the math, he should be fine long-term. A few days later Dr. Topal, the adult infectious disease man, gave us the name of the fungus and reminded us not to look on the internet, which we haven’t. He confirmed that he has never successfully treated a patient with this type of fungus medicinally so the right call had been made.
He spent Monday through Thursday in the Cardiothoracic ICU. We were given use of a private lounge with a cot so we could take our turns spending the night. On Monday, they woke him up from sedation and he was alert and communicative, gesturing for pen and paper to ask questions which ranged from the procedure to who pitched Sunday’s Mets game. They extubated him in the afternoon and he was far more comfortable.
While the ICU staff was attentive and worked with him to walk and breathe and eat, they clearly weren’t as used to a 20 year old as they were with the much older patients they routinely handle. From the pain and anti-nausea medicines, he was pretty disoriented for large stretches of time. His comments were loopy and entertaining and with each passing day, he was more cogent and awake for longer stretches of time. He had a steady stream of visitors from his priests to staff from 7-West who wanted him back. He was healing nicely and his surgeon was very upbeat about his progress.
On Thursday, he had the final two chest tubes removed and he was cleared to return to 7-West. Upon arrival, he discovered Child Life had decked out his room with pirate regalia with a huge welcome back sign. He settled into his bed and promptly drifted off into a long, deep nap; as if he was finally allowing himself to relax. That night, though, those final two wounds leaked and oozed and despite lots of pressure and blood products, it became difficult to control. At 2:30 a.m., it was decided he needed to be in the Pediatric ICU next door.
They got it under control and on Friday, they sutured all five exit wounds to be certain in addition to giving him lots more blood product. Dr. Joe McNamara, his on call oncologist, said there was some concern over clotting so they had to see if new products were required. Other than the sutured areas feeling tight, he’s remained dry for over 12 hours as I write this so we think the worst is over. Fortunately, they were able to keep his room intact on 7-West so we can easily relocate across the way today or tomorrow.
Right now he’s relatively comfortable and his blood work is encouraging to the doctors as he heals. He walks for exercise, which helps tremendously.
As he weans himself off the morphine for the pain, they will start him back on the chemo regimen to knock him back into remission. After two weeks, we’ve heard very little about progress in finding him a bone marrow match. Tomorrow, I’ll talk a little about two bone marrow drives that impressed the hell out us all.