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Cory's Cardio Crew

We love Cory so we out here

LATEST JOURNAL ENTRY - 2021-03-09T22:12:00Z

3/9/21

I didn't want to post anything yesterday because I didn't want to get too ahead of myself.

Yesterday Cory had his pulmonary threshold test (or something, they put him on a treadmill) and his carotid arteries checked. He also met the social worker, the physiologist, the dietician, and the cardiac nurse practitioner.

Last night and today they were talking about discharge in an actual serious he can go home kind of way. 

Today he met with pharmacist, the palliative care worker, and the social worker along with the cardiac nurse practitioner (I really liked her but she was always around in the mornings before 10am so I had only met her one other time).

The palliative care doctor was very nice. She said most people meet a palliative care doctor when someone is going to hospice or something, but she's really just here to make sure the transition to home is smooth. The social worker talked with us about support networks at home if Cory needs surgery (which we're still hoping he doesn't) and about any other questions we had.

Here's the run down:

Cory has advanced heart failure, however, his heart is working 8% better than when he first arrived. Cory is on a few medications that he will take every day for the foreseeable future. In about a week we will come back for an appointment in the clinic where they assess how he's doing and how the meds are working. We then will be back here very frequently for a few months. They will add another medication at some point, but not yet. His heart rate is still high, but the NP said that it was normal for a young male with heart failure to have a fast heartbeat and to try and slow it down would make him sick (which is exactly what happened at Waukesha Memorial when they tried to slow his heart). We just have to take it easy, follow their directions (exercise, low salt, minimal water) and hopefully his heart will get stronger. 

Cory is also going home with a FANCY life-vest (he keep weirdly calling it a fire-vest). It monitors his heart rate while he's not here and will zap him if something bad happens and his heart needs it. It apparently hurts but also apparently you're usually unconscious if you need a zap.

We also have an emergency line to call if he ever feels sick or unwell at all, the NP was so nice about it, saying that they get paid to answer that call so don't ever feel bad about calling if we need to. Putting it off will make things worse, so if we come in and say he hasn't felt well for a few days they will actually be mad. 

So I guess I should also mention, Cory is officially going home today! A nurse was literally just here and I asked and she said for sure today. It probably won't be until around 7pm, but it will happen today.

I plan to keep updating this journal for anyone that still wants updates. A LVAD and transplant are not off the table. If these meds don't work or if he gets worse again we may be back for surgery. We're just crossing all of our fingers hoping that every entry from here on out is a positive and happy post. We plan to spend some time in the next week or so working on new routines and getting back into our lives. Cory currently wakes up at like 5:30am and eats breakfast so getting used to that will be weird enough.

Thank you all for the love and support. This isn't over yet but at least the hospital part is!!! (unless he doesn't follow the rules) And I know they'll never see this but the nurses and doctors have just been amazing here. And I hope we never see them again.

<333 Sarah

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