It's been a while since I last posted...the words that quickly to mind when I think about our current lives are exhaustion, unbelievable, and survival mode. This blog was created to keep those interested/concerned about Danny updated so I want to try to keep focused on him. However, I've recently realized that the reality of Danny being in end-stage heart failure & being kept alive by a mechanical pump does not feel like the most stressful thing in my life right now. I'm ashamed to even admit that because clearly there is something seriously wrong or unhealthy about that. All that to say, to keep the transparency in my thoughts/feelings flowing in this blog, I really have to write about me also. I'll start with Danny. He's been home for almost 2 months now and has had ups and downs. It's hard to remember how his energy level was compared to now but I'm pretty sure it has increased. He is still completely exhausted by the end of the day. Usually he plugs himself into the wall and goes to bed by 8:00 at the latest. It never fails that he needs some water, chocolate pudding, his phone, etc...after he's already plugged in and can't get that stuff for himself. he doesn't use a bell, but it's pretty close. We went to the LVAD support group at the hospital in November and I discovered that all of the LVAD patients get really tired by night and go to bed early. It's a good thing they all have a care giver to take care these nighttime needs!!
Though his doctors cleared him to return to work (because he's a software developer and therefore sits at a desk), Danny's work hasn't let him return. It's a little hard to understand because the typical employer would want their employee at work ASAP. Danny's company is amazing in that they genuinely care about him and want his health to be the priority. They do not want him to overdo it and are just overall worried. All of the emergency responders in our home area have been trained on how to care for an LVAD, and Danny's work wanted the EMS by the office trained as well. On my fearful days, I worry that maybe they won't ever allow his to return to work, but that's not true. They really care about him and their kindness and support has been overwhelming because it's so much more than a typical company would do I think. They bring us food, visit the hospital in New Orleans when Danny is admitted, do laundry for us (I know---it's amazing!! One of Danny's coworkers lives near us and is the one who drops off food or whatever the office sends. When she was here one day she saw the laundry piled up and took it home with her. How do you express gratitude adequately for something like that? I don't even know her well)
On a routine basis Danny's cord gets stuck on the corner of the bed or cedar chest when he gets up to use the bathroom through the night. It makes him feel crazy for his lifeline to be stuck. He doesn't have an actual panic attack...but I could see him going that far if we were not able to get him unstuck quickly.
His driveline exit site looks good. It's really cool how his skin has begun growing onto the cord thereby making it water-resistant at some point. (that's when he will be cleared to take a shower--with a "shower bag" for his computer and batteries and "saran wrap" (according to the nurse...I'm not sure if she was serious about that or not) wrapped around his abdomen covering and sealing in the exit site). Bacteria going into that hole would have a direct line to his heart which could be fatal.
The last couple of weeks he has urinated blood, coughed up blood, and had many bloody noses. Apparently these are rare, but possible side effects of an LVAD. I think Danny has had every unusual issue an LVAD patient could have.
Today the transplant coordinator from Ochsner called and asked permission to move Danny to 1A status rather than 1B. Remember he was 1A prior to the LVAD at which point he dropped to 1B. Someone with end stage heart failure is more stable with an LVAD than the heart failure patient with no LVAD...hence the drop to 1B. Apparently even though Danny is 1B with the LVAD he has 30 days he will be moved up to 1A. The lady called to say now is a good time to put him on 1A. I didn't ask but I'm guessing right now is his best chance for getting a heart because holiday time is upon us with lots of drunk drivers. That's such a sad, hard reality. We were told he is on high alert and to definitely have our phones on and close by at all times. The good news is that I don't really have to wrestle with the conflicting feelings associated with being a heart recipient. God already knows Danny's future and has promised that His plans are for Danny's good, not disaster. It's important to remember (should God's plan for Danny differ from our plans for him) that physical death and eternal life counts as good...not disaster!
I'm back at work until transplant. I started teaching (elementary) last school year in November so that makes this my second semester teaching. It's so hard! You would think that 1st grade material would be pretty easy...but that's not always the case! The paperwork associated with teaching is more that I could have ever imagined. I'm completely bogged down with paperwork and data that most of the time I feel like I've spent more time doing that stuff (no direct impact on students) than I spend developing effective lessons (100% direct impact on students). I routinely work 15-20 hour days and even then I feel ill-prepared. It's frustrating and disheartening to have a mental picture of what a person or situation should look like, but consistently fall short of that standard.
A couple of days ago I spent some time crying on the phone with my mom. Sometimes a good cry is so therapeutic! She asked me if I felt more stress from Danny's heart failure or my job. As unbelievable as it is, I feel like it's the work. I tell myself that can't be true because that clearly represents misplaced priorities, but I think it's true. The last time Danny was admitted I remember not being happy with myself because I felt physically more relaxed than I do at home. I'm not even going to try to analyze all that but I can easily say that I think something is definitely wrong with me!)
On a positive note, my administration at school is amazing. I can't imagine a more supportive environment short of working for Danny's mom...which sadly I'm not allowed to do since she's the principal at her school.
It's pretty awesome that both of our employers are so wonderful! God's timing is also awesome! This week has been exceptionally difficult for me--stress, work, lack of sleep, the list could go on...Several old friends, who I don't talk with regularly, have contacted me because I've been on their heart so much lately and they've been praying for me. Only God can have people reach out to each other with such perfect timing!!! When I feel like I'm drowning it's nice to hear (I know, but it's still nice to hear) that people care.
When I slow down a bit, I consider the very real possibility that Danny's chest could be re-opened, his heart cut out, and a donor heart put in. To be very honest, all of that makes me feel ill. I just can't even imagine how he feels. The stress here is a little unbelievable. This morning a one point we were all four yelling (it's all OK now). I'm so sad that the kids have to experience this type of stress in their lifetime. Prayerfully they learn God's faithfulness, peace, and joy through times of pain. It's one thing to read about God's faithfulness in the Bible but an entirely different thing to learn is through personal experience. Those are good lessons that will serve them well throughout their lives.
Thanks for praying and loving us!