I feel like I should detail the events that led to Vincent's passing. If not for the followers of this blog then for myself. The previous post seemed so hopeful...I'm just still trying to make sense of everything that happened.
The day before he passed we checked in on him in the morning and his ventilator settings were back up. Evidently, he had some trouble that night and they had to up his settings because he kept de-satting. His ventilator settings were back to the maximum and his O2 was back to 96. His sats were in the 80s but his blood pressure was still very low. They did start weaning him off the Pavulon and we were able to see him open his eyes for the first time and what beautiful eyes they were. Looking back now, I wonder if when he was looking at us if he was trying to tell us something. Maybe he was trying to say hello or perhaps goodbye. I don't know but I remember feeling so sorry for him....for everything he was going through.
We decided to take a break and take a walk through Golden Gate Park. It was a beautiful day and it was nice to spend some time together and just take a break from everything. When we got back that evening, his sats had dropped into the 70s. The doctor on that evening came up to us and basically told us that he didn't think Vincent was going to make it through the night. He said that every time they tried to wean him off of anything his sats would drop. They started giving him the Pavulon again which seemed to help his sats but the doctor said that wasn't a long term solution.
We pretty much lost it...all the hope we had was gone. We felt powerless. We stayed with him the whole night just staring as his sats...watching them go up and down...it was terrifying. We asked if they had a room at the hospital we could use to rest for a little bit and they were able to accommodate us with one. We layed down for a few hours and I remember dreaming that we were preparing to take him home. We were getting the car seat ready and driving to the hospital. I remember feeling excited and relieved that he was finally coming home with us.
It was at about 6:00 a.m. when we heard a knock on the door. I'll never forget that moment...we woke up and we just knew. We went to see Vincent and they had him on the hand ventilator and his sats were dropping into the 60s. As much as we didn't want him to...he was letting go. They put us in a room and brought Vincent in and we were able to hold him for the first and last time.
It's been over a week now and we're still trying to make sense of everything. Everyone has been very supportive and we thank you all for that. We have a great support group of friends, family and co-workers as well as our online followers. The doctors and nurses at UCSF were phenomenal, especially nurses Sue, Jeanine, Robin and Crista. I don't know how they do what they do but they are extraordinary people. Our genetic counselor, Katherine Button and Dr. Kobori at Kaiser have also been a great support through this whole thing.
We are planning a memorial service for Vincent next Saturday. Anyone is welcome to attend...the details are as follows Saturday, October 17th, 12pm noon