A few small updates:
- We are hearing that Dr. Karl (the surgeon) prefers fenestration in the cath lab. This is indirect as Dr. Karl is out of town. Drs. Tarnoff and Karl obviously need to speak to each other and our understanding is that will happen on Monday.
- We're now hearing that surgical fenestration might require time on the heart-bypass machine. We had been told by the cardiologists that it would not. We hope to speak with Dr. Karl on Monday to clarify that.
- The heart cath has been scheduled for next Friday 3/23. We'll be the second case in the morning. Surgery won't happen until after the cath so that puts surgery into the week of 3/26 at the earliest. That makes it a certainty that Riley will be in the hospital on his birthday (4/2) for the second straight year :-(
- Diuril has been discontinued. Riley is also receiving albumin every three days to manage the PLE.
Amazingly UCSF doesn't have any type of in-room internet access (wired or wireless). The nurses and doctors don't even use computers, the charts are all kept on something called "paper" which I understand was popular in the ancient Egyptian medical community. Until now we'd been forced to use the crummy shared PCs in the family resource room, available only a few hours a day. This should make a big difference and allow us to stay more connected.
5 comments:
No room access? In SF? They should be ashamed of themselves :)
Seattle Children's is rolling out room access. Its in all the ICU rooms, public areas and some wings but not everywhere. Still, I relied on it for my sanity.
I am sorry that there is some difference of opinion. I started my period of greatest anxiety in relation to Wren's surgery when I realized that he would receive different treatment at different hands or institutions. I wanted there to be One Best Way written in stone. I hope your cardiologists and surgeon(s) manage to come to consensus in Riley's case and I kind of hope he avoids bypass.
Is there no chance you will be going home between this cath and future surgery?
Surprized by no computer access and paper based systems at a hospital as large as UCSF. Most hospitals ICUs now have computers in patient's rooms (for staff use at least) and also "COW"s (computers on wheels) for rounding room to room throughout the day.
Sounds like the usual Left hand has to talk to the Right hand deal (surgeon/cardiologist). If I were a betting man, I'd go with what Tarnoff said at this point.(..hmmm, the guy doing the surgery, or the guy talking about the surgery)
Hopefully friday will come quick for you guys...
Most other units now have the computers on wheels, they were just rolling them out in April 2005. In September we were surprised to see them everywhere except in the cardiac PICU units. When I asked about them this time around I was told that cardiac peds has resisted and will be sticking with paper.
i have been reading your journal for some time now. i have a 13 year old son named riley. we have been praying for riley for a very long time. i have been lighting candles for riley at church on sundays.. please know that riley will continue to be in our prayers...god bless riley...love, gina
Hi guys,
still thinking about all of you and sending you good thoughts!! It was poignant that Riley lost it over Tylenol of all things--poor little guy, I totally understand--you pull yourself together and manage the big stuff and then some little thing is the last straw. Any chance they'd let you use the chewables in the hospital? Oy. BTW, is somebody coordinating food deliveries? If that person would contact us at 415-309-9161 or cyd-at-cydharrell.com/jdouglas-at-jdouglas.org we'd love to join the rotation.
hang in there!
Cyd & Jason
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