Just another day...

Today I'm pleased to report that Danny is feeling better. He said he believes the Meropenem (IV antibiotic) is beginning to tackle the infection. Dr. Young (the doctor he sees in clinic) came in yesterday to see him. We haven't seen him in a while. He told us that they revised something about tissue typing in the transplant guidelines (or something like that lol) and they are hoping that it will be easier to find a match for Danny, which means a better, faster chance to get a pair of lungs for him. We've been told that he is as far up on the transplant list as he can go. So hoping for another call saying that there is a pair for him, except this time we want to skip the part where they come back in and inform us that its a 'no go'. Needless to say, it gave us a little more hope that this looooong wait will come to an end.

This H1N1 thing is scaring me though. My mom told me today that there was a confirmed case in my nieces kindergarten class. So although they live two houses down from us and I love them very very much, we have got to limit the contact with them. Danny cannot afford to get those germs. But if we wash our hands religiously I have faith that we will keep it away from him. There has also been 38 cases reported in the Morgan County School System (which we live). So that doesn't mean that we can't catch it from anywhere.

I am SUPER glad I get to pick Ashton up tomorrow from his daddy's. We hope we still get to come see Danny on Saturday. Danny's friend Josh lost his license so he hasn't been able to come see him in a while. So I am going to bring him and Ashton. Loooong drive, but makes Danny feel better to see different people (although my smiling face should be enough:])!! I have also just realized that it was about this time last year that Danny had to start enduring the stays that exceeded his normal 14 days in the hospital. Since then, he has been home no longer than 16 days at a time, sometimes not even being able to stay 24 hours. He was in the hospital for my birthday last year, Ashton's birthday, his birthday, Halloween, Thanksgiving, Christmas, New Years, Valentine's Day this Jyear, Easter, and I honestly can't remember if he was home for 4th of July or not?! He missed his dad's wedding and all the other events that I KNOW he would have loved to attend.

On a better note he is glad to actually be WAITING on lungs (if that makes any sense). He is looking forward to being able to actually take vacations to the beach, play ball with Ashton, take walks in the park, and enjoy the everyday things that we take for granted. But enough ramblin' from me. Bye 4 now...

Update:

Today Danny has been on his bipap alot. He is short of breath and can't seem to keep it under control. I woke up this morning and paid a few bills before heading to stay with him at UAB for the rest of the week. Ashton went to his dad's house last night, but I will return to pick him up on Friday. Paw (Danny's Grandpa) stopped to talked to me while I was loading my bags in the car, and was just asking how he was. I got here at about 1pm and Danny was sleeping. Been napping since I got here actually. I just hope he sleeps well tonight. He seemed to struggle to get up and travel to the bathroom, while pulling his IV pole behind him. The bathroom really isn't that far, so it kind of worries me. Hopefully I can get him up to take a shower tomorrow, and if that doesn't make him too tired I'll make him get up and walk after dinner maybe. Lately he hasn't been doing very much walking, so hopefully I can get his strength built back up. But, I guess that's all the update I have today. TaTa for now :)

Home for now...

So, I had been staying with Danny at UAB, but got sick Friday night and decided to come home for a few days to keep from giving him any sickness. I headed home Saturday and picked up Ashton. Sunday I was feeling a little better so decided to take Ashton to Chuck E Cheese. Felt good to be able to do something fun with him. Usually its the same old stuff: come home and clean and do laundry so I can pack my bag to head back to stay at the hospital with Danny. Today we got out of the house too. Went to visit a good friend of mine Shelly. We watched Days of Our Lives while Ashton played around. I found out that Danny will have to get a change of antibiotics because obviously some of the others aren't working. He is allergic to the nebulized Collistin, but they are going to try to give him the IV form. I hope they are cautious and watch out for rash and such. When he took it in a neb it slowly started giving him a rash and then his breathing passage started closing up. But I'm hoping that it works and continues to work for him. I'm pretty sure he is sitting at the hospital bored to tears, because he accidently deleted instant messenger from his laptop and I had to bring it home with me to reinstall it. The wifi at the hospital doesn't allow us to get on MySpace or Facebook or any game sites so really IM is the only thing he uses. But on a good note, I have this feeling that we will get a call for new lungs soon. We've been told that he is as far up on the list as he can go! [I believe it when they say you spend more than half of your life waiting....because that's all we have been doing!!] But all we can do is pray and leave it in God's hands. He will take care of us :) I miss Danny and glad that I get to go back and stay the week with him, but I love and enjoy my time at home with Ashton! Ok enough for now. Will hopefully teach myself to keep this thing up to date. It kind of helps me to get things off my chest. Thanks 4 reading :)

8-28-2009

I recently decided that I needed to keep a daily account of my life for a couple of reasons: one, for us to look back on after the wait for a pair of lungs and the surgery/recovery-two, to help family/friends informed of what's happening, as we are about 90 miles away from them-and last to keep my thoughts in order because here lately I'm so busy with everything that my days are beginning to run together. So, enjoy!

Today a wonderful nurse will be laid to rest. One that offered warm caring advice and administered warm caring hugs. As one of my husbands Cystic Fibrosis nurses, she will always be remembered for making the worst situations seem so much better. I have been praying for her friends and family, along with all the other nurses and doctors here that had the pleasure of working with her. She will forever be close to my heart. RIP Barbara 'Shantel' Rich. http://tinyurl.com/kp4vvs

So far today has been good. I didn't sleep to well in this recliner, but got to sleep a little late. Heard the doctor come in and tell Danny that they are waiting on his sputum sample to grow some bacteria. Danny's been sleeping most all day, besides the interruptions by the doctor, respiratory and the nurse coming in to draw "tobi levels". No bad spells for him though, so far. And I hope that the day continues to go well for him. I'm going to try to get him out of bed to take a shower and walk later. But for now I'm just going to let him rest, which means I get to watch whatever I want on TV :)