Monday, December 23, 2013
One week since the call
Today is exactly one week since the call that a heart was available. The change in Danny's appearance is absolutely amazing since surgery! His color looks so good that Maggie told him she thinks he's secretly using tanning spray when no one is looking!! :) I put my ear to his chest and was absolutely blown away at how big and strong his new heart beat is. Praise God for amazing healthcare…the average life span of a heart transplant is 12 years and just a couple of years ago it was 6 years. That 12 year number doesn't settle well with me. Danny's only 38, so 12 years is 50 and that's pretty young still!! We met a couple recently in the lab (it's amazing how many LVAD and transplant patients you routinely see in the local lab!! It's like the corner coffee shop for sick people. lol) and the man has had his new heart for 17 years so that's pretty encouraging. I've had other people tell me wonderful stories of heart transplant patients who have lived much longer than the "average"…so that's what we are trusting the Lord for. That being said, I want it written down in case I have to reference my own words one day that I believe and trust that God's timing for our last breath is the perfect timing and Danny's last breath on Earth (whenever that is many years from now) will be his next breath in Heaven…and no matter how sad that feels to those of us left on Earth…it's still cause for celebration! Enough of that….
Tomorrow Danny is scheduled for a heart cath and a biopsy. I assume they can get the biopsy at the same time as they do the heart cath because I know the cath goes through the carotid all the way down to his heart. A 2 in 1 procedure!! The biopsy is checking for any signs of his body rejecting his new heart and the cath is checking on how the heart is doing. Assuming both of those tests are fine, he should be discharged from the hospital either Friday or Monday (the never discharge heart patients over the weekend). After discharge we are required to stay in New Orleans within 30 minutes of hospital for 6-8 weeks. Ochsner has some apartments reserved for transplant patients but they are currently full. There is a hotel connected to this hospital that we will stay in since the apartments are full. The apartments are much cheaper than the hotel, but we will be able to stay in the hotel for the same rate since the apartments are full. That's a blessing because we would have to bring linens, kitchen stuff, etc… to the apartment and I didn't want to have to deal with that.
I'm just so amazed at his progress. He is in so much pain that is completely understandable, but he doesn't let him stop him. When PT or OT come in, he just does what they say without complaint. You can see the pain in his face, but he doesn't quit. I'm so proud of him!! I'm so proud of how hard he is working to get stronger and better so he can get back to life!!
They've increased the doses of his anti-rejection meds. I didn't know that anti-rejection meds are steroid based but it makes sense. Every day and throughout the days they change dosages of the steroids based on labs and they are continually adding other stuff. Today they added some sort of medicine to prevent some type of eye disease. I can imagine the frustration of some that I don't know exactly what all the meds are treating…but I'm telling you there are a lot of medicines going into his body and I can't possibly keep track of them all.
Danny is not looking forward to the heart cath and biopsy tomorrow…he's sick and tired of being poked and prodded, but good test results tomorrow will result in his last IV coming out. yaaaaaay!!! He has one chest tube left and as soon as it stops collecting fluid (more than 150 cc in 24 hrs) it will come out. Then a shower won't be far behind. He's going to be soooo excited about that shower!
I keep thinking about how the medicines do weird things to his sleep. I wonder if a sleep mask would help him with lights bothering him and I'm also wondering if one of those sound machines that play water/wind/etc…would help. Do men ever wear eye masks and listen to soothing sounds during sleep or is that only a girlie thing?? Can I overcome the nighttime medicine-induced "hallucinations" with an eye mask and sound machine? hhhmmmm…Maybe a little lavender scent for relaxation!!! Sounds delightful to me!
The cafeteria people don't do a great job of giving the patients what they ask for. The patients get a menu each day on which they are supposed to circle what they want for the next day. Rarely is it correct. It's strange. But today was just hilarious and worth a picture!
That's all that was on his tray for lunch. They forgot the entree!! Danny did a double-take and wanted to know where I hid his food. It was pretty funny. Good think his appetite isn't back to normal yet and a side salad and jello was enough!
Danny could totally be a commercial for a Sonicare toothbrush. He loves it and can easily brush his teeth even right after open heart surgery because the toothbrush does all the work! It has a timer and makes a little sound or vibration variation when it's time to move to the next area of teeth and gums to clean. When he first got the toothbrush, he made the kids stand next to him and brush their teeth next to him and they couldn't stop until his automatically shut off. It was pretty funny…both kids think Sonicare is pretty hard core. Good stuff. I hope they're excited when we get them their own. If they use it as directed I bet they sure won't have any oral hygiene issues!