Instead of the soccer t-shirts that say BEAST on the back, he needs an LVAD beast shirt!!!
Something really, super sad happened this morning that he is still holding a grudge over...He saved his last 200cc of water to drink between 6:00-7:00 this morning. That's right before his new 1000cc count would start for the new 24 hrs at 7:00 a.m. The x-ray tech accidentally knocked over his cup of water and he about lost it! She didn't comprehend why it was such a big deal and said "it's not a problem because I can just go get you more water". By the time she got back with more water, it was after 7:00 a.m., so he couldn't drink it without counting it toward the new day's allotment. Danny was so upset that tears rolled down his cheeks. The nurse explained to the tech that Danny is on a serious fluid restriction and that he works hard to ration out his water carefully. She told the tech that basically she had taken Danny's water from him and then the tech finally understood what she had done. I tried to limit myself to 1000cc of fluid yesterday and it was miserable...I decided I didn't need to finish that mission to have compassion. Clearly, I'm not a beast... :-(
The other sad thing that has happened last night and today is that the nurses haven't given him his pain meds on time. There are 3 patients (from what I can tell) who are in really bad shape. Nurses and doctors are literally running up and down the halls to get to people. So what happens is that Danny gets pushed to the back burner because he is stable. Also, anytime a patient in the ICU has to be transported within the hospital for some type of test, the nurse must accompany the patient the entire time. If that transport happens to be during Danny's pain medicine time, he's out of luck because apparently another nurse cannot dispense that medicine for Danny. Another problem with medicine timing is that narcotics are locked in a cabinet and there is only one key on the floor that all nurses share. This key seems to get misplaced a lot, which delays medications. So basically we have to start asking the nurse at least an hour before hand for the pain medicine and then keep bugging her about it...and even though the doctors have made it crystal clear that Danny is not to miss a dose of pain med so he doesn't get behind on the pain again, they still don't (or can't) bring it to him unless he asks at the correct time. So throughout the day and night I set my alarm to remind him to ask on time. ALLLLL of that to say, he hasn't had his pain meds on time last night and today and he hurts and is grumpy.
These are pictures of him with no pain medicine in his system... :-(
After the medicine kicked in...
Later in the day Danny had his first walk on battery power!!!
That bag he is carrying has his controller (computer that runs the heart pump) and 2 batteries...
Learning how to switch to battery power and then back to AC power.
They finally took this IV out...it went into an artery and was so painful... his body is just bruised, sore, and swollen everywhere. I wish I could take some of the pain for him.
The surgeon is still trying to get his BP perfect---it's a very different process with a motor pumping the heart than a normal heartbeat. Danny is now on oral BP medicine rather than only IV, but they kept him in the ICU another day so they can continue to give him quick doses of BP medicine through the IV in his hand or neck to work with the oral medicine as needed.
O wow!!! I forgot this...Danny and I listened to his heart with a stethoscope today and it was so cool. The left side of his heart sounds like the steady hum of a washing machine (that's the LVAD pump), and the right heart still has a beat because it has to function on its own. So, depending on where you check in his body, he may or may not have a pulse. It's weird, but cool!
- pain medicine on time
- good blood pressure with oral medicine
- move out of the ICU tomorrow
- Family, friends (Body of Christ) supporting us through prayer and monetary gifts.
I'm just so humbled and thankful for you. There are not words to express how I feel (and I know Danny feels too) about your support. Thank you for caring and loving us! When we (or anyone) has financial needs and we give those needs to the Lord in prayer, it is truly miraculous to see how God uses His people to answer those prayers. Thank you for having ears to hear the Lord and the faith to obey!
We love you!!
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