Yesterday:
3:30 pm : Got update from the OR that she left the procedure room and was being transferred to the recovery area.
4:30 pm : Arrived by Jodie's side in the ICU after she got out of the operating room. She wasn't asleep but not yet really awake since anesthesia hadn't worn off yet. I spent some time with her and talked to her nurses about the plan for the evening. They were planning to keep her overnight in the ICU recovery area, and move her to the main hospital in the morning. I went out to my car to grab her things that we brought with her on Sunday so she could have her phone and computer and clothes etc.
6:00 pm : Went home to let cats out of their confinement, check in on the contractors progress, and settle my parents in to our house where they would stay the night.
7:30 pm : Went back to the hospital with additional things for myself to spend the night in her room.
8:45 pm : Mark and Lupe (Jodie's dad and step-mom) arrived and went in to visit for a little bit while waited out in the waiting room (visitor limits in that area).
9:30 pm : Jodie was falling in and out of sleep, and there were nurses coming in frequently to check in and get samples throughout the night. I turned in for sleep, and woke up pretty much every time someone else came in to check on her.
Today:
5:00 am : Woke up in Jodie's room in the ICU and they got her up out of bed to walk up and down the hallway for a few minutes. She was looking more awake and feeling a little more comfortable in a reclining chair instead of the bed.
7:30 am : I went back home again to herd cats, get a shower, get coffee and breakfast.
9:20 am : Got word from Jodie that they were moving her into the main hospital and she told me the room number. Thankfully, her cardiac doctor that she has been seeing since moving down here is working this week on her floor and will be around to give us updates. Very reassuring since we know him.
9:30 am : Mark arrived and found Jodie to be with her in her room.
10:30 am: Arrived at hospital and the nurses are trying to determine why she is running a fever. They took many fluid samples and gave her Tylenol. We will know more once results come back and her doctor comes back in to update us.
3:25 pm : We got a visit from a couple doctors and nurses that told us that they were waiting to get results back regarding the fever; could be a few days before we have concrete word. Until then, she is being "grayed-out" on the heart transplant list (not considered for new hearts), at least until she no longer has a fever and has been deemed clear of possible viral infections. To be clear: at this point they do not expect it is the coronovirus, they have not had any cases of that at Duke. In fact, there have been multiple transplant patients currently in the hospital that have tested positive (within the past couple weeks) for a more benign and different virus more similar to the common cold that they would be far less concerned about (it had a really long technical sounding name I don't know). This right now is the more likely suspect if it is viral in nature. Her fever is already coming down.
BACKGROUND
As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.
In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.
WHY DID WE START THIS BLOG?
Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.
We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.
Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.
Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.
God bless,
Jodie & Peter Elliott
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
Thank you for the updates. Love to you both!
ReplyDeleteThanks Peter, make sure you are taking care of yourself as well.
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