Day5:

So if you haven't noticed, I'm not really good at blogging everyday. I either have waaaaaay too much to do, or resting from having so much to do. But I have a wonderful update! Two of the six chest tubes are out and he is eating soo much better. Hopefully some of the other chest tubes will come out Monday. His friend Tony, who had double lung transplant only 11 weeks ago, came by to see him.Wednesday. Tony looks wonderful! I can't wait to see Danny gain his weight back! He got out of bed yesterday and sat in the recliner for a while and ate his dinner. Today he was up walking laps around the nurses station, with NO OXYGEN! We had the post-transplant class yesterday. Before the transplant they told us it would be like trading one set of problems for another, and boy are they right! At least he will be able to breathe and enjoy his life while dealing with this set of problems though! I am so excited to see him enjoy his life. He is already laughing and thinking about what all he wants to do when he is able to do so!

Quick update:

Danny was moved from CICU to Transplant ICU and is doing well! He still hasn't gotten out of bed but I think they are going to try that today, as well as remove some of the chest tubes. He is having really bad back pain but has ALWAYS had pain in his back, so I didn't expect it to go away. He ate a little yesterday! He is only on 1liter of oxygen, but the nurse turned it off without telling him yesterday and he didn't even notice :) He told me yesterday that if his back wasn't hurting him he would be up running! He also said he's ready to go to the Zoo! Where that came from, I don't know (could be the meds LOL), but I'm ready to take him anywhere he wants to go! In the next couple of days they are going to start teaching him about all the new meds he will be taking. Thanks for all the prayers! We thank the Lord that they were answered and he is recovering nicely!

The WAIT is OVER :)

Danny FINALLY has a new pair of lungs!!! The surgery was over about 4am this morning and the first time we got to go back he opened his eyes and squeezed my hand. He tried to talk but couldn't because of the tubes in his throat. He is doing GREAT and looks good too. The breathing tube just got taken out and he is breathing on his own. I got to see him about an hour ago and his only complaint was "I'm HOT!!". I will try to update as much as I can. But now it is time to catch some sleep. Thanks for all the thoughts and prayers :) This is what we have been waiting on for a looooooong time!!

PATIENTLY waiting...

on the doctor to tell us if the lungs they have for Danny are good. So we should know within the hour if he will be headed to the operating room. Thanks for all the prayers, and those of you who simply read and understand me :)

been a while:

I know it's been a while, but really nothing new going on. Still here waiting. I went home for about 5 days and got to spend my birthday with Ashton. It was wonderful. Things seem to be looking up. Danny got a letter from Social Security telling him that they would not ask him to repay the money that they over paid him [which didn't make sense to me how it was HIS fault], and all the bills this month should be covered by his check. So no worries there. Now, my father in law has figured out what is wrong with my car. I need a transmission. But, it made the 2 hour drive back to the hospital very well :) I just can't drive at night because I don't wanna be broke down in this town in the dark! But, I am just praying that my car lasts me until this whole transplant ordeal is over! Dr. Young came in a while ago and asked Danny again if he is ready to go home. Of course he said 'no'. I pray every night that this call will come. But it worries me that Danny is not up walking like he should be. Every day since I have been back I ask him if he is ready to go for a walk and his response has been 'tomorrow'. What if the call for transplant comes and he has not gotten up and walked further than the bathroom for a month? IDK. All I can do is have faith that he will take me up on my offer to get up and walk. I did go outside for a walk today though. Walked around the block about 4 times. Kind of refreshing to me :) And it is soooooo beautiful outside. Well, almost time for Hell's Kitchen and I can't miss that. LOL. Hopefully the next time I blog it will be about getting that loooooong awaited phone call!! ::crosses fingers::

stressed:

Although I am on the edge of a mental breakdown, I have told myself that I have to hold strong. Not only for myself, but for Danny as well. I know he has a million things to worry about, but seems like I have THREE MILLION things to worry about. Sitting at this hospital day after day gets old, and I know Danny has to do it as well, but I would feel so much better to have him home for a week or two. It just seems like he doesn't want to try to go home. Every time the doctor mentions it he just seems to get worse. Maybe not on purpose, but I am almost to the conclusion that alot of it is in his head. I've seen him hop out of bed and almost sprint to the bathroom, but if the doctor asks him about if he is ready to go home he lays in bed for the next week. It is hard on me. I'm wasting money eating down here when I could be at home. Worried about my house, Ashton, what kind of bills came in the mail this month, my car is broken and I have to get Danny's dad to bring me. It just never ends. I sit here watching Danny sleep with nothing to do, with little human contact. I am lonely. I miss Ashton. He's the only one that makes me forget all the troubles in my life. He loves me unconditionally. IDK. Maybe its this wait. I pray every night that tonight will be the night that they call us with a new pair of lungs. But I don't know if I am ready. I am broke, no job, my car is broken, and the list goes on. But I HAVE to be ready. For Danny. It seems like I don't get to do anything FOR TRIXIE anymore. While Danny lays there with only DANNY to worry about, I have myself, Danny, Ashton, my house, the bills, my car, and only a million other things to worry about. Danny promises that all the hurt will be worth it when he gets better, but that leaves me to wonder if that is just something else that he's telling me to make me feel better or if he really believes that it will all be worth it?

So close, yet soooo far away...

It has been a week since I've blogged, and not alot has happened. I got to bring Ashton and Danny's friend Josh out to see him last Saturday. He enjoyed hanging out and talking. Also, Danny almost got another chance at a pair of lungs. But the doctor said that they were too far away, and weren't the best quality. They'd really like to find a good pair of lungs for him. So, we are still waiting on lungs. He got up and had a shower yesterday, and I know it had to make him feel a little better. The first time in a while that he's been able to actually get up and get in the shower. He got up and did a little walking too. He hasn't been able to do that in a while either. Went outside and sat on the benches. It was a little muggy out there, so we didn't stay out long.

The government cut Danny's check (SSI) because they say they over payed him last year. I don't see how that's his fault, but whatever. It wouldn't be a big deal if it wasn't our ONLY income. That barely paid our bills in the first place, now it puts me in a bind. I have to worry about paying the bills, and having gas money to travel to Birmingham. UGH, sometimes it just seems like life kicks you when you are already down. But the only thing I can do is keep my head up. Do what I can, and worry about my family. I wish I could work, but being this close to this transplant is what we have always wanted. If I did get a job, as soon as the call came I'd have to leave and be prepared to stay here for 4-6 weeks or more. So right now I'm just managing the best I can.

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 :)