Today has been a bit of a roller coaster. We suspected that it might be busy, but, boy, we had no idea!
After the standard beginning of the day with blood draws at 5:00 a.m., vital signs and weight at 6:30 or so, and a new day shift nurse at 7:00, the day was off and running. Right away, we were told to expect that Tami would go “pretty soon” for a couple of transplant-related tests. In the meantime, the first visit was actually from a Duke volunteer who had received a heart transplant only 16 months ago. You would have never known that he had had any heart trouble, especially not 0a transplant so recently. His job is to go around the floor encouraging those who are needing or who have just received a transplant. As he was talking to us, the entourage of doctors came in – the attending cardiologist, the normal fellow (doing all the real work as far as we can tell in the past week), the floor resident, the transplant coordinator, a pharmacist, and another resident. (There may have been one or two more.) As they finished up (more on that later), there was a patient services rep, a medical psychologist (more on him later), and two transport nurses. Off for a mammogram and a pulmonary function test on an almost 2 hour tour all the way to the new clinic building. Back in time to see the social worker (does Tami have supportive family and friends to help with post-transplant care? :-)). Then the medical psychologist (think sitcom psychiatrist a la Frasier or Bob Newhart and you have the right picture…). Does Tami have bouts of depression that last days or weeks? How often does she completely forget to take her medicine? Aside, I know, sadly, that there are many people who do not have stable families, who could not handle the daily regimen of drugs that follow transplant, who have no social support network, who would be overwhelmed by the stress of waiting for a transplant, whose financial situation is so fragile that the long term cost of care would be overwhelming, so I recognize the blessing of having these things, and I don’t discount at all the medical value of assuring that transplant candidates increase their viability by having these things as a part of their pre- and post-transplant care. So we are blessed that both of these members of the transplant team said that clearly Tami had considered the magnitude and difficulty of the transplant process and that she obviously is very loved by many family and friends.
Oh, yeah, back to the doctors. Not really any news, just that it seems pretty likely that we will get to go home tomorrow. (Whaaaa?) Yep, they were serious. A few interviews still with the coordinator and financial services (and maybe that’s all…). Then the transplant committee meets on Thursday and we should hear by Friday whether Tami has been approved to go onto the heart transplant list.
But back to the parade. Cal and Renee Orr came to visit for the afternoon. We are blessed, again, by more friends who make the long trip to spend time and encourage us. They arrived just as the psychologist left. And, just as they got settled in to visit, the representative from the infusion/home health company came by to tell us a little about the pump Tami will have and how it works.
I think this has been the biggest challenge for us this week. Not even the shock of having to unexpectedly consider the transplant work up and all that that means has bothered us as much as the challenge of having a 24/7 IV infusion pump and PICC line to manage. Keep praying for us as we figure out how to adapt and adjust to what can and can’t be done and how to maneuver this new season of life. So the infusion pump rep showed us the pump, the carrying case, how to feed the new iv line into the pump, how to push some buttons to operate the pump, how often the pump and iv bag must be changed and roughly how that’s done. We will get another, more detailed teaching session about all of this tomorrow (that’s the other person that’s coming), but let’s just say that we are more than a little overwhelmed by the whole process.
Oh, and lest we had nothing else to do, we got a call from the nurse in charge of the clinical trial that Tami has been a part of, and she came by to collect the remaining pills, etc. (Have I mentioned before that when she started the new IV med, that Tami was disqualified from continuing the trial drug?) The nurse ended up coming back much later to drop off some end-of-trial blood work to be drawn in the morning. Hopefully, she will bring the specific research trial-approved EKG machine in the morning, as well, and also get the lead doctor over this drug trial to check Tami in the morning before we leave. (I guess that’s even two more people, so you can see that tomorrow will be a crazy chaotic day, too!)
Oh, somehow we had a great, long visit with Cal and Renee, too! Tami even got to leave the floor, and we all had dinner in the outdoor courtyard together.
We are exhausted, and since the morning starts by 4:30 or 5:00 and it’s 1:00 now, I need to go to bed!
Thank you all for continuing to pray for us in every way!!