September 14, 2016
The stay in the hospital ended September 2nd. Scott's been home since then with his artificial heart put in. There have been some complications along the way. During the stay in the hospital, Scott had a stroke. There seem to be no lasting effects from it however. We also had a scare when his driveline became unattatched. The hospital staff were immediately retrained on that mistake. They held him for 5 days longer than expected due to his blood thinner levels being too low. Then, after all of this, the day after being home he got a sinus infection and we've both been sick since. It's definately been a rollercoaster.
Once home we realised there are more challenges. Moving around has proven to be harder at home than it was in the hospital. Being sick may contribute a little, but overall it's been a struggle. He continues to deal with weakness in his legs. He's fallen once since being home when he tried to bend over while standing. A small bruise appeared after but no serious injuries. He has difficulty with every day tasks and needs care almost around the clock. I was able to get him a shower chair and with the Doctor's orders he can finally take an actual shower. Little steps.
Tomorrow we're getting a walker and he's going to start walking our breezeway for physical therapy. We have a nurse coming in twice a week to check his blood and a PT and OT set up to come sometime this week. His dressing needs to be changed everyday on his drive lines, (the tubes from his side to his pump) which I trained to do. He and I were trained to change his pump out in an emergency and we have a spare. He still needs to go back and forth to NC 3 times this month and twice every month after that until the end of November. During these visits they will check his pump and switch it out periodically.
August 2, 2016
Out of Surgery and in recovery! Hopefully they'll wake him in a couple days.
August 1, 2016
We left the room at 5:30 am this morning. They came in to get him and take him down to get prepped for the OR. Donna and I got to see him before they sedated him and we said our goodbyes about 7. The doctors started about 8:45am and they keep updating us every hour. They say he's doing good. Please keep praying.
July 30, 2016
Scott was admitted yesterday for his pre-op stuff. Heart cath, x-ray, EKG and lots of blood tests done. He'll start his operation preparation about 5:30 am Monday and they'll start the surgery about 8 am. On average the TAH surgery takes anywhere from 6-18 hours. I will update here as I get updates. He will be sedated for days after, anywhere from 2-14 days. These are estimated times from best to extreme. We hope Scott's time falls somewhere in between or (even better...) on the lesser side.
July 29, 2016
The first steps on Scotts journey started this morning. His doctors wanted him admitted to the hospital over the weekend for prep and testing for Monday's surgery. He is nervous but in good spirits and thanks everyone for their continued love and support.
July 24, 2016
We find out Monday 7/25 what day we go to the hospital. Scott's Total Artificial Heart surgery is the 1st of August, but they may want him in a day or two earlier for pre-op stuff. This will be our final week at home together for a long stretch. The average hospital stay after surgery is at least a month. They will remove his defibrillator (ICD) and his IV Picc Line (Primacor). No more home nurse and no more home heart monitor machine. These will be replaced by a battery operated heart pump in a rolling backpack. He will be hooked up to that 24/7 until a heart becomes available.
July 21, 2016
So, something good came out of all of this today! Ever since his radiation, when he was very young, Scott's teeth have been bad off. The radiation took a toll on many parts of his body. To most it will probably seem like a small thing, but to someone who has been embarrassed by his smile for so long, it was amazing! When you have major surgery they worry about infections in your body spreading. One of the big things they look at is your dental health. Scott's been seeing a dentist at the hospital to work on getting some infection cleared up and cavities filled. In doing so, they put fillings in 4 teeth today. 3 were his front teeth. Being that they are the first thing that people see when you smile, he's been self conscious about how they've looked. Today, when he sat up from having his fillings done, he smiled at me. It was a very crooked smile, as his face was still droopy from the medicine, and I chuckled a bit. This made him smile a little more and immediately I noticed a huge difference. No more black spot or small chip! They handed him a mirror and I can tell you happy doesn't even describe what he felt today!
July 19, 2016
Recently my doctors have decided to put in a Total Artificial Heart to get me through to a full heart transplant. The IV medicine (Primacor) that I am on now will not support my heart for the average amount of time I will need to find a heart donor. This TAH could give me upwards of about 2 years time. What this means is that my ICD (pacemaker/defib) will be removed and I will be off the Primacor IV meds and have a mechanical heart. This also means that I will need to be in the hospital in NC for at least a month. My body will have to adjust to the TAH and I will need medical attention 24/7. Dawn will have to make frequent trips back and forth while she cares for me, works and takes care of the dogs and our home.
July 11, 2016
Hey guys, we will be heading to Charlotte again 7/11 to get the word on full artificial heart or waiting for a donor heart. Scary stuff but I have faith in the lord above that he has directed me to the right people.
