Jenn has been receiving fantastic care at the Mayo Clinic, but it’s always been clear that she can’t stay there forever. As such, I have been working with Mayo’s awesome social workers and care team to try and figure out the best next steps to support Jenn’s recovery. Ideally Jenn would be sent to a Long Term Acute Care hospital (LTACH) hospital which provides, well, long term acute care until such time as a patient is able to transition to a rehab setting. Because of her tracheostomy and feeding tube, Jenn can’t yet fully participate in a rehap program because she still has complex medical needs. Minnesota has two hospitals that are designated as LTACH facilities and fortunately, both of them are closer to home. Unfortunately, there are only the two — the entire state has only the two — and so the thought was that we would get her on the wait list and figure out some sort of hopefully short-term solution to bridge the gap. And so it came to pass that on Wednesday, referrals were made and I sat back waiting to hear what that timing might possibly look like. Imagine my surprise when I heard back a few hours later that one of the LTACH facilities, Regency Hospital in Golden Valley, actually had space available and could take her the following day, Thursday.
I was very nervous about how Jenn would handle being transported from one facility to the other, especially as the facilities are an hour and a half apart. We have been working hard to keep Jenn off any sort of sedation medication, and the nurse at Mayo wouldn’t let me have any either. And so it was with a bit of trepidation that two medics and a respiratory therapist, along with all their associated medical stuff, Jenn, a driver, and myself, loaded up into an ambulance for what I figured would be a challenging journey. While I tried to anticipate everything that might go wrong, Jenn fell asleep within the first five minutes and slept peacefully almost the entire way, probably preferring the relative quiet of the ambulance to the noisier hospital environment.
I’d love to say that things have only continued to improve, however, we unfortunately had a very rough start. While this seems inconceivable to me in the digital age, a lot of Jenn’s medical info apparently didn’t transfer with her which has led to a number of miscommunication, false assumptions, and, from my perspective, safety concerns. Add to that the challenges of going into a weekend — hospitals tend to staff differently over the weekend — and it’s been a challenging beginning. That said, the team has worked hard to try and reestablish normalcy in Jenn’s program, at least until we are able to come up with a more formalized care plan.
Where do we go from here? On Monday, we will come up with a more solid plan of care with the goal of getting Jenn ready for more intensive rehab therapies. In order to get there, the focus will be on doing whatever’s needed to eliminate the need for her trake and feeding tube while providing her with occupational, physical, and speech therapies in a way that cannot be done in a critical care setting. That’s the plan in extremely broad strokes, I should have more specifics after the weekend.
As I write this, Jenn is eating cinnamon applesauce and she can’t get enough of it. The funny part about this is that she used to hate cinnamon applesauce, in fact I wound up eating most of a jar of it that we once got by mistake because, as she put it at the time, “There’s no way I’m gonna eat that nasty stuff.” It’s a great start and we’re slowly trying other foods with her, but until she can consume enough calories by mouth, she needs to keep her feeding tube in place which, since it’s not comfortable, is a real challenge. While still at Mayo, she was already “liberated” from her feeding tube once which is a fancy medical way of saying, “the tube fell out.” The process of getting it placed again is one that I hope to never ever have to witness again.
Hopefully I will have more to report soon. Jenn’s road to recovery will be long, but we continue to travel it one step at a time.
