Trish and I made it here to Rudy at 11am. Still strikes me how routine the whole entry has become. Finding our way through parking and up onto the room is rapid and smooth. Our entry into the unit with bags slung over our shoulder is peppered with greetings to the various nurses, staff and doctors who we haven’t seen for a few days. We’ve been in the room for about three hours and it’s been a constant stream of check-ins with one person after another about what’s been going on the last few days.
The brief status update is that the team is still trying to schedule the lymphangiogram procedure. This is complicated and involves not just the doctor being available, but also the right techs and facility. Some of the best minds in the joint are now involved in what must be a massive e- mail thread to keep moving on this. Drs. Robert, Dan and Mary have all been cautious to set our expectation appropriately–this isn’t a magic bullet and there may not be a crystal clear result, but they do feel that it’s worth it to wait for any information it might give before going ahead with any kind of surgery. So, the surgery option is off the calendar for this afternoon and we are hoping that somehow all of the lymphangiogram pieces will come together for this afternoon, but seeing as we’re approaching 2pm on Friday it might take a logistical miracle.
Once again, arriving here amazes me at the lengths to which so many gifted people are invested in Rudy’s treatment. I only have a taste of the the amount of attention he is commanding. In addition to dogged research and the team discussions, there are phone calls and e-mails to other doctors all around the country–all focused on getting Rudy over the hump. We are so grateful for the hands we’re in.
The one point of progress continues to be Rudy’s nutrition. He’s now up to 4ccs of formula an hour and seems to be tolerating it well. For the time being, Dr. Kelly doesn’t want to make any steps on the ventilator to complicate things, so we’ll focus on nutrition and take the progress there for the time being.
Speaking of nutrition, my stomach is trying to sort out cravings for clam chowder or cream of tomato, which means it must be Friday. Since Nurse Amy couldn’t hold out on her OCD any longer and Rudy has a clean set of sheets, we’ll leave him clean and comfortable and go get some lunch.
2 thoughts on “Update from Back at the Bedside”
Sure Rolf, you go eat your delicious soup while we are all fasting! Just kidding, I am thankful for my fast which is to be broken pretty soon now. I prayed a lot for Rudy, specifically led to pray the most for nutrition (God and my hunger pangs led me to that one), and also for all the doctors, nurses, and those caring for Rudy. So glad to take some extra time to pray for you all. Have a good weekend with that precious boy!
I have been praying for all of you and especially for the doctors involved that they will see the key piece of the puzzle to making Rudy progress appropriately. Have a great weekend with Rudy and your family.