Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts
Sunday, October 4, 2009
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 :)
Labels:
CF,
Cystic Fibrosis,
hope,
lung transplant,
UAB,
waiting
Tuesday, September 29, 2009
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::
Thursday, September 10, 2009
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.
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.
Thursday, September 3, 2009
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...
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...
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