Friday, October 18, 2013


It's been a while since I've written because what we're dealing with now is more emotional than physical, though physical concerns are still very much present. It is good to be home. The kids feel more settled when we are here and I feel like a better mom when I'm with them. So I find myself wondering why my heart feels so desperate and lonely...Danny is alive~the pump is doing its job. What kind of person am I to feel sadness? I should be rejoicing. I am, usually. His journey has turned to an emotional one. He does not appreciate being tethered to a power module at night and doesn't much like being dependent on battery power either. The other night he got up to use the restroom and his power cord got stuck on the cedar chest at the foot of our bed. Not a happy camper!! We were back at Ochsner Wednesday for another checkup (second this week-blood work issues) and they drew a LOT of blood. We were told the extra blood is to make sure he doesn't have certain diseases that would prevent him from being reactivated on the transplant list. I thought he was going to come out of his chair because he made it crystal clear to me that he would NOT get an LVAD unless it was a means to transplant. He was planning on how to tell the doctors to "get that pump out now" if the bloodwork showed something that would prevent transplant. (I don't anticipate that being a concern) Of course Danny is grateful to have the LVAD because he wants to live, but at the same time I think he hates having a mechanical pump hanging from the bottom of his heart. If Danny rolls to his side, he can feel the pump sway to the side and apparently that's not comfortable! We found out Monday that the surgeon placed blue plastic OR towels in his chest around where his heart and LVAD are in preparation for the transplant. Apparently this will prevent any potential damage to the LVAD or heart when they recut him open and also speed up the transplant process. Anyway, the plastic "towels" are not comfortable! Danny's driveline exit site looks amazing...his skin is beginning to grow around the driveline, as it's supposed to, and it looks good! When the skin has completely grown and a seal is formed, Danny can use a shower kit to take a shower. The kit is a waterproof bag the controller goes in, and Danny wraps plastic wrap around his abdomen to keep everything dry. I know he will be grateful for a hot shower--washcloth baths are getting old!

 The problem we are having with the driveline exit site is that Danny's skin is really sensitive to adhesive and therefore stays red and sore where the bandage sticks. The redness is visible in the picture. I feel terrible when I have to pull off the old bandage each day because his skin is just raw where the tape was. The hospital sent us home with something called skin protector, which is applied to the skin where the adhesive will be, but I think Danny is even allergic to that!! It's really sad because there's nothing I can do!

Danny doesn't like the way I drive but I think it's pretty good! However, I have been struggling to stay awake lately while driving. It's weird in that I'm sleeping at night but am waking up still exhausted. Anyway, to be honest I just about got in a wreck the other day when I fell asleep and veered into the other lane almost hitting a truck. Thankfully, Danny woke me up in time.  The good news is that one of three doctors think it's okay for him to drive again, so we are going with that opinion!

This coming Wednesday we will be back in New Orleans where Danny will have a speed echo. This test records what the heart does while increasing the speed of the LVAD. The test lasts about 2 hours we are told and it won't feel good because Danny has to lie on his left side. He hasn't been able to do that yet because it's still painful. He will have labwork done and be seen in the LVAD clinic to make sure everything is okay. It's not going to be because he is retaining fluid. The backs of his legs are starting to hurt because of fluid retention. He had gained a few pounds when we were there a few days ago and the doctor wanted to wait and see if the pump would be enough to keep the fluid off. They increased the speed of the pump in hopes that it would help with the fluid. They would rather that than keep Danny on Lasix because Lasix decreases his kidney function...and that's bad because he only has one functioning kidney. Since Danny was hospitalized a few months ago the pattern has been that as soon as he stops the Lasix he starts retaining fluid again, and I have a feeling that won't change regardless of how fast the pump is running. Just a gut feeling...

When we were at Ochsner this past week, a transplant coordinator came in to talk about being reactivated on the list. I was shocked at how hard that was for me. Obviously I know that transplant is the end goal in all of this, but we are not even completely used to the LVAD yet! We are just beginning to get used to home and are trying to be back at work by the beginning of November. The thought of starting all over again in Ochsner with major open heart surgery and being there even longer than we were with the LVAD is just completely overwhelming. So, deep breath and one day at a time!

Danny is still really struggling with the keyboard and mouse. His hands are so shaky that he's having a hard time on the computer. It has improved some and will probably continue to improve, but the reality is that many LVAD patients have the shakes as well as other physical changes as long as they have the LVAD. We are just believing in the Lord to make Danny's hands work properly so that he can continue working at the same level he was before.

  • pray for patience in waiting for a transplant
  • pray for donor and donor family
  • pray for LVAD to be able to correct excess fluid
  • pray that kids are better prepared for us to be gone again
  • pray for an easy transition back to work

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