August 30, 2013

It was suggested earlier in the week that we might go home today (Friday) as long as everything was stable and Danny felt OK. That didn't last long. The past few days Danny has been dry-heaving with intermittent actual vomiting. This is his body's way to try to get rid of the excess fluid that stays in his abdomen. Those that know Danny know that he is normally very thin and now he looks like he is a few months pregnant! No wonder he constantly complains how full he feels...We are back in the off and on cycle with Lasix. When he is on it, fluid drains quickly and after time his BP drops too low and he becomes nauseated...it also causes his kidney function to suffer. If the doctors cut back on the Lasix to help out the BP and kidney, he quickly builds up fluid again, therefore putting to much pressure on the heart and also making him nauseated. So, there's a very fine line about what to do with Lasix. We have doctors that are currently in their Fellowships working with the cardiologists and other doctors on the transplant/LVAD team. Sean, the Fellow that was on Danny's rotation when he was admitted on 8/9/13 was very easy to work with because he was such a good listener. That quality enabled him to quickly realize that to best treat Danny, he had to really pay attention to what Danny and I told him about symptoms and overall feelings. Test results just do not always give a completely accurate picture of what's going on with Danny. Wednesday was the last day for that Fellow rotation, so Thursday we got a new one--Conrad. That's hard for us because we felt so comfortable with Sean because of how he listened to our concerns and really included us in the process. Please pray that Conrad will deal with Danny in the same way. This afternoon, Conrad did come in and sit down and pick my brain about Danny's nausea, vomiting, fluid retention, etc...That was encouraging!

Yesterday I was trained in how to do his IV medicine and pump should Danny go home before surgery. Though it seemed pretty simple and I'm capable of doing it...it sure is scary!! That's the IV med he was off of for less than 10 minutes when he went into v fib and I don't want any part of that on my watch!! I'm not sure that he will be going home. The doctor asked Danny yesterday if he was OK staying here until surgery and Danny gave a relieved "YES!' He's scared and that certainly makes sense to me.

Since he was shocked by his defibrillator week before last ,Danny has been having nightmares reliving the shock. One night he was hit with water really hard in his chest, setting off his defibrillator and another night someone threw some type of big object through the window and hit him in the chest. It's interesting that (according to the psychologist that works with the transplant team) people who have been shocked by their defibrillators suffer symptoms that are comparable to PTSD. He is scared to fall asleep for fear of the nightmares. Even during the day Danny doesn't want me to leave the room. I imagine that as time passes since the shock the fears/nightmares will lessen, but until then I'm (happily and honored to be) glued to his side!

There aren't too many interesting pictures lately because he is either sleeping or stuck with his pink bucket, totally nauseated...I've got two of those pics, but I also took some of our home away from home!

The master bedroom wall...

 

The guest sleeper couch wall...

 

 

The living room with the big, flat screen wall...

 

 

Our front door and entry way...

 

 

 

Window view...Danny works for a wonderful company (Antares) and they sent him beautiful flowers. The flowers have since died but the sticks are now blooming!! The view outside is pretty grim, so we are enjoying watching our sticks grow...:) Danny has a dream to somehow make a rooftop garden out there. So many heart failure patients have to look at that roof each day and I can testify that it does not create an atmosphere of hope and joy!  Anyway, I'm sort of proud of my budding green thumb...maybe the secret for me is using only water instead of dirt!?!?

 

 

Current prayer requests: end to nausea/dry-heaving, wisdom and ears-to-hear for doctors, faith in God's perfect timing for donor heart/LVAD for Danny and I, peace and comfort for the kids, and whatever else The Lord leads you to pray. I wish I could personally thank each of you for your prayers...please know that we thank God each day for you!

 

~Tricia

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As you can imagine, the cost of a heart transplant is staggering. Should the Lord lead you to help us financially, our contact info at PayPal is helpdannysauer@gmail.com