Rolling Updates from the Waiting Room

I have to admit that we/I did not pay any attention to the details of what to expect today. We have done this a couple of times before, and I have hung out in this waiting room in years past. We were supposed to arrive at 6:30 to check in to Interventional Radiology so Jon could have a central line installed for cell collection. We did that, arriving right on time. They immediately took him back and gave me a number to watch on the board (no more names, just numbers). So I know that the patient is in pre-op. What I don't know is how long this takes, or how far I can wander. Nor do I know when we are expected at the next location for the hours-long pheresis event.

Of course, there are reasons for this lack of attention. One is that we trust that we will be instructed as we go, and we are familiar enough with the hospital and its systems. Two is that the baby was the most important news, and this was much less interesting. 

In brief, Rebecca had an appointment at 8 AM on Friday, the day after Thanksgiving, to be induced. She had Alissa and Julia as her steady support team, and they switched off until the end when both were there. It took five different shifts of doctors and nurses to get from zero to baby. Throughout the process, everything was calm and careful. There were decisions to make along the way, as the baby's heart rate got high (they paused and waited) and it seems that the medical team was entirely confident that it would all happen but it might take a few days. By early Sunday morning, it was time to push. The contractions were not coming fast and furious, so pushing took a while. Reports are that Rebecca was a very good pusher (better than she expected). The baby arrived in good shape, even after 48 hours of medical coaxing.  Alissa says that once she heard, at the nurse shift change, that this was "the positive room." She also heard them describe Rebecca as a patient with a large, supportive family (this was after no one could answer directly who would be present to take the patient and baby home, since there were many choices, and it depended on how long this took). Everyone is very happy with the whole 50 hour experience, largely due to the wonderful nurses and excellent doctors. Rebecca and Thalia had Benjamin as their overnight support last night -- he is the most qualified to change diapers on infant girls, after all.

More later. They just called me in to sit around with Jon while he waits for the procedure. So far so good.

 

11:15 AM. Pheresis is underway, Jon's numbers look very good (white blood cells, etc.) and everything seems to be on track. They say that they collect up extra cells in case the pharmaceutical lab has bad luck with the first batch -- they can do another try without making us come back and do all this again.

Jon is in the same bed he was in when they put the central line in -- a big deluxe bed that is easy to roll down the hallways. There is a dedicated passageway that goes all the way around the outside edges of this big building, just for transporting patients on gurneys. Only the very edges of the perimeter, where the windows are, are for waiting rooms and reception. Behind the doors is a vast network of pre-op beds and procedure rooms and recovery rooms and wide hallways. Anyway, the support person rolled him down many hallways, around corners, up briefly in an antique and tiny elevator, and I noticed that when he was driving this rig he was just like me on a tractor -- using his phone. I was glad that I have two good knees because we were moving along at a determined pace. I tried to pay attention to where we were, but there were no good landmarks. Just a warren of turns. And yet, I know we just circumnavigated lots of areas that I am familiar with.  When I went to find Jon something to eat just now, it was just a short distance to the cafeteria, once I went out through the doors of the apheresis clinic. One of the warm and fuzzy things I remember about this institution -- reinforced repeatedly -- is that if you stand still and look confused, someone will stop to ask if you need help. Every person who walks these halls is ready to help you get where you want to go. It is like part of their mission statement -- leave no one standing alone and confused.

Last night we fulfilled one of Jon's dreams by walking about two blocks to a fast casual Peter Chang's restaurant. Two dreams fulfilled, really: a menu full of great choices AND a stipend that supports all our eating and sleeping costs. I mean, what more is there?

We haven't even contemplated where all this is going -- that these cells are meant to be reconfigured to capture and kill myeloma cells. Everything seems possible from where we sit today. 

We asked the doctor who came in to answer all questions if Jon would be even more immunocompromised than usual and she said, yes for a few days. He will have fewer white blood cells than he came in with and he should just stay inside and rest. When we asked about the new baby and how that fits in, she said that was outside her area of expertise but the baby would also be without an immune system and the two of them would be equally vulnerable. They are both supposed to stay away from bio-hazardous people, and each other.

I am pretty pleased with how healthy Jon is right now. Better than we have seen him in quite some time.