Thursday, February 6, 2014

Long time, No Post!!

Well, I've dropped the ball and haven't blogged in a while. We were sent home from the Brent House (hotel attached to Ochsner in New Orleans) last week when a big (for ice/snow storm was predicted to come through. The hospital was cancelling and sending home as many non-critical patients as possible. We were still in New Orleans awaiting another biopsy, a left heart cath (he's never had one of those--only right heart caths), and some other tests before the doctors were going to release us to go home. The nurse called us at about 5:00 pm to tell us to go home and by the time I packed and loaded everything, it was almost 7:00 before we left Nola. 

We surprised the kids and they were both so excited when Danny and I walked in the door. Snowball, the dog, was hysterical with happiness. It took a few days to get the house back in order and I've been completely exhausted with that and just getting back into the routine of being a mom and house keeper. Taking care of Danny is a full-time job in itself because his medicines (and snacks) occur all throughout the day and his pain is still not good. He's still having a significant amount of incisional pain and some pretty bad pain on the right side of his chest--located sort of opposite his heart. Danny has mentioned the pain to the nurses when they call to check on him, but they say to remember that he's had his chest cut open two times in the last four months and pain is normal. So, we've just been trying to manage the pain and cope. Danny had the transplant 7 weeks and 2 days ago, which seems kind of unbelievable! Probably two weeks ago, the bottom part of the chest incision began swelling and bruising. That's also where the extreme pain is located. We've been trying not to worry about it and keep reminding ourselves that he's had two open heart surgeries, but often times the pain is disabling for him. 

He still spends much of his time in bed. I try to get him out at least once a day but that doesn't always happen because he doesn't feel well enough. He is also very shaky and still falls down, though the falling is less. Some days his shakiness is so bad that he can't eat soup or anything liquid really. The shakiness is a side-effect of the medicines as is the extreme pain in his extremities. I don't think he usually hurts in his arms and legs at the same time, but it's always either one. they burn (like a fire coming from inside his bones), cramp, and ache. He asks me to rub his arms/legs but then cries because touching him hurts. Apparently these medicines always have some pain associated with them, but the severity Danny is having is not a common. 

Yesterday the surgeon that did the LVAD (a different guy did the transplant because the first guy was out of town that particular day) called me to check on Danny. When I told him about the pain, swelling, and bruising he wasn't happy. He wasn't surprised to hear about the side-effects Danny is experiencing in his extremities, but was surprised about the incisional issues. He wants to see Danny when we are in New Orleans next for testing to check the incision and told me to call him immediately should any chest symptoms worsen. 

On another note... a few days ago my dad, some friends, and I teamed together to move a really heavy armoire in our house. During the move, the mirrored door (which is the heaviest part of the armoire) fell on my friend Kelsey's big toe and my foot. I assume the corner landed on her toe and the side of the door landed on my foot. Her toe is's split from the tip to the knuckle. My foot is not broken, but is badly bruised and swollen. I feel so terrible that she was hurt and wish it was my toe instead of hers!! Anyway, now Danny and I are in this weird predicament of trying to take care of each other. I can finally walk without excruciating pain, but shoes are still not my friend! On a positive, the armoire did get completely moved and reassembled, and looks beautiful in its new spot--where it's staying forever...

Danny has a personal goal of returning to work at the beginning of March. Hopefully the doctors will sign off on that plan. Thankfully, software developing is more brain exercise than physical, so he should be okay. The trickiness will be keeping Danny away from sick people. Danny has to wear a face mask anytime he is outside of our home for at least a year. In addition, he isn't supposed to be around anyone who is sick. Having a suppressed immune system isn't something to take lightly! I don't know the logistics of how he will manage working around other people who may be sick, but the company he works for is amazing and has already done more for us than we could have imagined, so I know returning to work will be okay too!! 

Baton Rouge has had 3 snow/ice days in the last couple of weeks...This is how south Louisiana kids dress for snow~HAHAHAHA...that's an icicle in Maggie's mouth!

It's great to be home again with these two kiddos... :)

1 comment:

  1. Thanks for the update. I continue to pray for you guys!