In response to what I wrote last week about VUMC’s “Excellent Care,” I realized that it wasn’t fair that I just leave it at what I said earlier…
Jens is an excellent patient. He never misses a breathing treatment. He takes the pills and does his IV meds at the crazy times that he’s required to do so. He knows his own body, and he’s learned to listen to when he needs a treatment or when it’s time to start IVs again. These days, his days are scheduled by his breathing routines. All of this greatly affects his eating schedule, as he cannot do the coughing and shaking (with the vest) necessary if he has just eaten. Many of his medicines also affect his eating schedule because some require him to take them with food and others have to be taken # of hours before/after eating. He is always thinking of what he has to do next, or doing the math in his head to see how long it is until his next thing.
Cystic Fibrosis Centers across the country operate on a “team model.” On the team are pulmonologists, nurses, nutritionists, social workers, respiratory therapists, and more. This serves to help the whole patient. Many other diseases also take this approach to patient care. With this model, the medical staff can work together to address many of the needs of their patients- and it doesn’t matter who is “on call” or “in the office” that day, as they regularly meet to talk about patients in team meetings. It’s a great model, and one that gives the patient a great sense of care. After being in Nashville over 10 years, these doctors, nurses, and others know Jens’s case very well here at Vanderbilt.
When he is admitted to the hospital, however, these doctors, residents, fellows, nurses, care partners, and respiratory therapists haven’t been sitting in on those team meetings. There is no “CF Floor” in the hospital, where Jens can be cared for by only those doctors and nurses who know his case.
I wanted to clarify my comments made in the last blog about not receiving “excellent care” at VUMC. On this visit, and on the last admission, to Vanderbilt Hospital, we did not receive excellent care over the weekend when Jens was on the “normal” floors. He missed breathing treatments because respiratory therapists didn’t come. (Which is a complete joke because he does these same treatments with the same meds every day at home 3-4 times per day. If we would have been able to know they were never going to show up, I would have run home to get his supplies.) The nurses were upset with him when he wouldn’t take certain meds when they scanned them. (Like I said, Jens is compliant, but he also knows the schedule of these meds and how they affect his breathing treatments and eating schedules.) After asking for a day and a half, Jens finally got bottled water delivered with his meals. (Why, on the menu, do they offer patients sodas, chocolate milk, and sweet tea in hospitals? Aren’t we trying to help someone heal and be healthier? We can only drink sugar?!?!)
In light of the weekend hospital stays where Jens is dealing with residents instead of his pulmonologists, being on floors where the nurses treat patients with [fill in the blank] disease instead of CF, we DO receive excellent care from many of his doctors, nurses, and others at VUMC.
Like Bethany- the ER nurse we had Saturday (and once or twice before) who came over to me to offer support, as I began to cry after the crowd of doctors left and Jens was finally calming down.
Like Hailey- the ICU nurse on Saturday who was fantastic about being attentive, yet giving us our space. She stayed on top of his meds, respiratory therapists, and the meal delivery people to make sure things happened when they needed to.
Like all of the other nurses we’ve had while admitted that have been GOOD, attentive, and efficient. It helps the healing process so much to feel like we’re in good, capable hands.
Like Dr. Willers, Dr. Slovis, and the other CF doctors- his CF team here in Nashville has done a great job the past 10 years helping to manage Jens’s health. They’ve seen the ups and downs, and we appreciate their wisdom and knowledge, as well as their personal care they give to Jens.
Like Danett- the CF nurse who we offered to come live in the guest bedroom in Pittsburgh. We cannot begin to explain the EXCELLENT and EXCEPTIONAL care she has given to Jens over the years. She truly goes above and beyond the call of duty: she checks in on him at least once a week, as well as flawlessly schedules his appointments, port changes, and more. When he is admitted to the hospital, Danett often visits him on her lunch breaks. And, as one of Jens’s biggest prayer warriors, we have always felt that she is one of Jens’s number one fans, always helping him to be the best he can be. We guarantee there’s not a better CF nurse in the country, and we are so thankful for the excellent care she’s given to Jens the past 10+ years!
Abby & Jens with Danett in October 2014 (The magic of updating blogs!)
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