December 17th - Christmas arrives early.
4:00 am - Pete's over night nurse gets him out of the bed and upright in a chair
11:00 am - On rounds they confirm the will be moving him down to a Telemetry Room this is 2 tiers down from the ICU at this hospital
11:30 am - All IV's are removed and portal heart monitor is setup
1:00 PM - Transfer happens; there may have been fist pumps
4:00 pm - after being in a chair for 12 hours Pete is tired and return to the bed;
4:45 pm - Doctors arrive to look at him. Most up beat they've been to date
Medicine is reviewed and updated all pill form now. Not increasing or decreasing the "wonder drug" adding in traditional Beta Blockers not leveraged so far.
Plan: Tentative discharge from this hospital Sunday or Monday
Destination: TBD base physical therapy next 2-3 days to determine strength and response to strain. It will be either to the house; or to a therapy bed close to home.
The LVAD is off the table for now, a pace maker is now the backup plan.
5:00 pm - Monitoring and rest is the order for the rest of the evening.
December 18th
Took a little step backwards - Cardiologist is using new meds, Hospitalist Dr not completely up on the use of that med. Blood pressure was low they mistakenly took him off the med instead of prescribing a boosting drug. Cardiologist found out at end of day and made the corrections. Missed opportunity for Physical Therapy today and lost ground on over all health. Back at it tomorrow.
December 19th
09:00 am Meet with the resident from Bryne/Loli team. We talked through the medicine confusion and he agreed to address.
Details: Pete needs the Entresto for it’s remodeling impact it helps treat the damage he suffered. A secondary effect is that it is also an ARB similar to Benicar, so to use this in his current condition he needs his blood pressure up through drugs or exercise. That's all sorted now. Drug is primary use:
https://www.entrestohcp.com/hfref/cardiac-remodeling is getting confused with the secondary. Took few days to extract the instruction don't take a dose unless blood pressure >= 105 but we are getting there.
11:00 am Pete's Cardio team showed up very please with the progress once again. Estimating he will be leaving Tuesday or Wednesday based on Physical Therapy assessment on Monday.
04:00 pm He's now done 3 walks and is watching the Packers.
06:40 pm Finished Dinner and going for last walk.
December 20th
08:00 am Set back over night - Fluid on the lungs. Treated with Meds; yet another cocktail of small pills.
10:00 am Got in one good walk
02:30 pm Consult with Team and decision made to relocate to Austin Immediately for improved health care and family assistance. Team would like him to get him on the road Tuesday. He's going to be wearing a defibrillator vest, will need advance case management in Austin, is back to being an LVAD candidate. New was now that the Doctor has seen his normal non-"crashed" condition he pause and stated that he personally would consider him as candidate for a heart transplant if heart doesn't stabilize; obviously off the cuff observations; but previously it was off the table as unsurvivable and not overall healthy enough.
03:30 pm Defibrillator vest ordered.
04:00 pm lots of planning and list making begin
Author's note Add much later: Everyone on the staff was convinced (excluding the lead surgeon) that they were sending him home so he could pass away surrounded by family. Many said so to me in person like I was a fool for not seeing that. Well duh! but we had other plans just needed to get him to like minded experts.
December 21st
08:00 am - Pete's looking good again this morning.
09:00 am - Fancy drug makes the blood pressure drop in a shocking way, but expected now that we know
11:00 am - Blood pressure is 75% recovered
11:15 am - Lead Doctor in for short visit and again wanting to get him discharged and on to the next steps
11:30 am - No Defibrillator office in Phily lost the request. Resubmitted
01:00 pm - Blood pressure is back up to 109/85
01:30 pm - Medicare rejects Defibrillator as not medically necessary, doctors won't release without it. More paperwork resubmitted to make the case
02:30 pm - Medicare versus Doctor debate ongoing
03:30 pm - Drug pick up at Walmart. Oddly very small number of items...(foreshadowing)
04:30 pm - Defibrillator training schedule for 5:30pm
04:45 pm - Drug all sent to the wrong Walmart back in Bullhead city, scramble begins to fix (hello left hand; this is right hand)
05:30 pm - Defibrillator Training
06:00 pm - Drug store quick sprint before they close
07:30 pm - Discharge and a slow evening drive to the half way point El Paso
December 22nd
We completed the journey to Austin. The Elevation of the west Texas mountains made the trip challenging for Pete, very hard to breath at the higher altitudes. In the end Pete did well, but it wore everyone down from the 8 hours of driving
December 23rd
Today was a day of figuring out which way was up and how to administer many dangerous meds without making any mistakes. We made arrangements to set up the first-floor Grandparents' suite section of the house. By Tuesday, what was an office, will be a private bedroom and bath setup. Pete's using a combination of the wheel-chair we have at the house and a walker to get around.
December 24th
Held a Christmas Eve dinner and gift exchange with a small group of friends that have met Pete and MaryBeth before. That went well and Pete was able to participate from his chair and had a good day with the focus of the hustle and bustle, not all about him.
December 25th
Today was Pete's first day using only a walker to move around (no wheel-chair day). Pete and MaryBeth worked on their list of things that need to be handled back in Bullhead City. We took a drive up to look at the progress on the new house and then drove down to introduce the location and awareness of the doctors' plaza and the hospital/ER that is about 5-8 minutes from our house.
We got some good news today. The cardiologist we want to take over Pete's care reached out through his nurse during his vacation. He would like all records transferred this week so he can review them. We have an appointment for the 22nd as a stake in the ground. We are also on the "cancellation fill in" list. However, the message we got appears to indicate he'll get an earlier spot at the Doctor's directive; we will find out for sure on Monday.
December 26th
Solid day for Pete, eating has gotten easier and more productive. One of the medications he is on is significant, but it's also very taxing to take at the prescribed two times a day. It produces good vitals but leaves him in a breathless state for an hour or two after taking. We are getting the timing of that worked out based on his vitals to minimize the struggle, but it still requires correct timing and a desire to fight through it mentally and physically. The before and after is best described as a micro-version of taking someone in for Chemotherapy. Good going in and wrecked coming out, but fighting through.
December 27th
Plan is to communicate with he doctors office during the day. Devin arrives midday for Christmas break and we'll be doing the full family Christmas tomorrow evening; so the day will be about rest and Family.
December 28th
MaryBeth Filled out lots of Doctor paperwork; for new patients and records transfer, etc. We have a universal rental application odd that every Dr office is reinventing the medical forms. Devin Arrived, and we did the traditional way too much food and a super long slow gift exchange session. Pete Managed the entire session from start to finish.
December 29th
We dropped off the records at the Doctors office.
The Front Office has been converted into a bedroom and got Pete and MB situated with their own space and bathroom.
December 30th
Dr. Office reached out, and the appointment with the Cardiologist is now on January 7th.
