Jesu Cristo, another busy busy day. (After another late, late night)
Julie went to PT this morning and picked up 830 aspirin for $4.79 at Costco, among other various and sundry things. Actually I may have had my cheapest trips to Costco ($29) and Trader Joe's ($12) today.
Jenny had a busy morning fielding phone calls while Julie was at PT. She had a phone appt with with Daddy's primary care doc to follow-up on a few random things. She spoke with the advanced cardiologist at the DC VA apparently 3 times, the anti-coagulation team at UPMC, and to the home care company (more on that later). Oh, and to a VAD nurse at UPMC. In Jenny's words, she played "me" on the phone today.
Daddy won the princess award this morning for sleeping in the latest. :)
Last night we had our first VAD alarm. It was a medium alarm indicating "low flow". Daddy's VAD flows are usually between 4.5 & 5.5 L/min. We think that he's set to alarm if he drops under 3.5 L/min. The protocol for this alarm is for Daddy to sit down, elevate his feet, and drink water. We all learned about low, medium, and high alarms and what to do for each of them. Jenny handled this situation like a pro while Julie freaked out. She took Daddy's blood pressure and called the 24-hour pager at the UMPC VAD program and spoke with an on-call nurse. We are to follow-up with her on Monday with a log of Daddy's vitals, and to call again if he gets the "low flow" alarm again over this weekend.
Perhaps the biggest news from today was a decision to go with the University of Maryland Medical Center (UMMC) in Baltimore for his VAD maintenance, transplant workup, and transplant (if applicable). They have helicopter transport for emergencies and are a medium/large VAD program. They do 15 heart transplants per year, whereas Washington Hospital does 4 and UMPC Presby does 40. Washington Hospital was really to small of a program, and INOVA Fairfax is really too far away for an emergency. http://umm.edu/programs/heart
We also need to revisit the whole Medicare/Medicaid thing. When Jaron looked in to it early on, either Daddy wasn't eligible or it didn't make sense to do or something. We are told that having a VAD hands-down makes him considered disabled by the government. His primary care doctor asked about "co-managing" with one of those, presumably a cost-savings issue for the VA. And figure out who would pay for helicoptering in an emergency.
Oh, also, Daddy wanted a podiatrist appointment to trim his toenails and assess the discoloration that he's had as long as he can remember. We requested this at the primary care appointment and the doc asked how urgent this was. It was on the bottom of the list of all of the other things that we need, such as a local VAD program, transplant workup, home care, dressing supplies, PT, OT, etc etc etc. Well, fortunately the DC VA called today to schedule that appointment. You know, the least urgent issue is the first to get scheduled. Ohhkaayyy.
Tacos for dinner tonight! Check back later for a post from Jenny with a video. Also, Jaron is due home tonight at 1am after a biz trip. I hope to NOT be awake when he arrives. Other priorities tonight are Nurse Jenny giving Julie "report" on all of Daddy's meds. A nontrivial task to be sure. And Daddy needs a proper rinse off in the handy-capable shower, and it would be nice to have two people helping since it's the first time. And since home care will never come because it's been an epic clusterf--- talking to them. :)
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