Sunday, December 22, 2013

Together Again

It's Sunday (12/22)...Danny had the transplant early Tuesday (12/17) morning. I got a sinus infection and had to stay in Baton Rouge on we are both so happy that I'm well again and back in New Orleans. 

Today he has one chest tube in and one IV...yaaay!! He still has the leads in for the external defibrillator...but hopefully those will come out soon too. We don't want him to need a defib!

Danny says he's seen every kind of doctor possible...and though I'm sure I can think of a few types he probably hasn't seen, I know they are trying to cover all their areas of potential concern. A transplant patient is at high risk for contracting illnesses and diseases because of their suppressed immune system. The amount of steroids Danny is like what steroid addicts dream of (according to the nurses). Last night it appears that the vein his IV was in blew out because his wrist and hand is super swollen and the bruising is pretty significant. The nurse quickly moved the IV to his other wrist. 

Swelling has already gone down a lot...but still pretty puffy!
The side-effects of that much steroid use are many, but one that Danny is noticing already is bizarre dreams that might be considered hallucinations. For example...Danny says every night he thinks the urinal next to his bed is our dog Snowball and he talks to him. The nurse comes in and checks to see what's going on with Snow when he hears Danny start talking! I'm excited to hear about his crazy dreams now that I can stay with him through the night. 

One of his nurses has told him two times now that he is the reason why doctors and nurses come to work...a patient who does what he is told, works hard, and is pleasant to work with. What a wonderful compliment!! 

He made a lap all the way around the circle of the transplant unit today and is definitely in the bed resting now!! He was told today that a shower won't be too far in his future. I know that's going to feel so great as he hasn't had one since his LVAD was put in on 9/5/13. 

Danny is being trained to take (some of) his medicines...ones that he will take for the rest of his life that can cost around $3000/month. Prayerfully our insurance will cover the bulk of that! Anyway, the meds he is learning to take right now are in a locked black box. The medicines are separated by type into ziplock bags and there is a printed out form with a table of times and doses. They are having to change the doses of many of the medicines constantly as they see how his body is responding. Apparently every person reacts to the anti-rejection medicines in different ways. The constant is that these medicine cause significant mood issues. We are told Danny will feel fine one moment and the next have a complete meltdown...I bet there are some sympathetic women out there!! Over time his body will become used to the medicines and the emotional stuff will settle down. As far as a steroids go, right now his body isn't liking the steroids and it is trying to fight back. The solution to that is increase the doses of the anti-rejection medicines. The nurse described it as they are having to bully his body into submission by steadily increasing the doses of the meds until his body submits. Pretty wild and still just unbelievable. I mean seriously...I know for sure that clearly God knows that Danny and I can handle this because He is allowing us to walk through it. I know that because the Bible says it's true and I believe the words in the Bible. But if I stop and think about what is really happening to my husband I feel like I'm having some kind of out of body experience. Sometimes I hear people say that I'm strong or brave or something and I'm no so sure. I think we can just chalk all that up to the Holy Spirit that lives inside of God's children. I'm just me. Tricia. 38 years old. Brand new teacher of 1st graders. Wife of 18 years. Mom of 2 great kids. Sister. Daughter. Aunt. All of those things are completely believable and I can handle. This whole heart failure, LVAD, and now transplant thing is still just unbelievable. I can't even think of a better word. I'm not angry and not necessarily scared. I know that God loves us and wants what is best for us. I know that our days are numbered and I know what our eternity I don't live my life in fear and I don't think Danny does either. Sometimes I feel numb and other times I want to crawl into a ball and cry. Mostly, I just enjoy taking care of Danny in whatever capacity that looks like. I love teaching, but I think I would have loved nursing even more. 

Sometimes I get messages through facebook from people I've never met, but who have been following the blog. I've also heard from friends of mine about people they know who are following Danny's story through the blog and they feel connected to us and are faithfully praying. I just want you to know that we appreciate you and are so humbled by your faithfulness to pray for us. It's definitely the most important thing we need and God has been and I know will continue to be faithful to meet our needs. It just touches my heart to know that there are people that we don't know personally who care enough to pray. Thank you!!! 
These are only the meds that Danny is pulling right now. The nurses are pulling all of the other ones still. They train a few at a time to try not to overwhelm the patients and/or caregivers. 

Danny's locked medicine box
The meds and card with medicine schedule
Tuesday Danny is scheduled to have a heart biopsy done, which is similar to a heart cath. Not very pleasant but also not the worst he's been through. They are looking for possible signs of rejection. 

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