That would be Wegener's, and that is not good!

Laura you and your family are in my thoughts and prayers.

 

Still thinking about you Laura, Our thoughts and prayers are with you little sis.

 

More prayers sent out here and be strong Laura. We all have love for you and your family.

 

Keep strong Laura! Any updates on this would be appreciated, prayers still going out.

 

I got a text from her yesterday that stated her dad is doing a little better and then gets a little worse and then a little better. His breathing is increasing but its still irradic. Whenever I hear more I will be sure to update and she appreciates all the prayers and thoughts and would like them to continue as much as everyone can.

 

I'm definitely praying for him and his family! Hang in there Laura!

 

We are all meeting at the hospital at 10am to decide whether to keep him on life support or to let him go. It's the hardest thing you could ever imagine. I'm always going to second guess my choice no matter what. My Dad doesn't have a living will so we don't know his wishes. I'm so tore up over this. Just broken. I've fell into this deep depression & just kinda forgot there's even a world that is still spinning out my front door. I just feel like I got robbed. I keep praying & praying that God holds me up & doesn't let me fall on my face, but I think I've already fallen, so I guess I'm praying he'll pick me back up. At this point, I feel like I can't live without him. I can't imagine him not calling everyday, or me not doing his shopping & bickering with him over the little things. He always said he'd live forever & I guess iin my heart I believed it.
Well, I have to go. I've already crying, I'm such a mess. I have a bad feeling that I'm going to start crying & go into a panic attack & start hyperventilating & everyones gonna freak out which at all costs I want to avoid, but when I'm reeeeeeally upset it happens & I can't control it. I don't want anything to be about me, I want everything focused on him.
Thanks for all the prayers, keep praying please! Love you all

 

Been texting back and forth a little bit with her today and her dad is doing better. She said the hospital said he is showing improvements and is over the "hump" and are weening him off of the vent. It's obvious to me that the prayers and thoughts are working so please, keep them coming.

 

That is good to hear. We will keep your dad in our thoughts and prayers Laura. Hang in there kiddo.

 

Yeah, I just got home. We were supposed to all meet at 10, I was rushin cuz I was 5 minutes late & we waited & waited for his dr to show & she said she would be there in 20 min., at that point it was 10:15, she didn't show up till 11:44 when we were all literally walking out of the SICU & she had starbucks in her hand. I just thought it was rude to set a time & date & be late & while your already running late, you stop for coffee? Sorry, I'm not myself lately

We spoke with his kidney Dr, who said his kidneys are improving, his lung Dr. who said they are doing trials. Yesterday he did a 2 hour trial without the vent & he did well. They are going to keep taking steps till he can go 24 hours without it. Basically they are trying to rebuild his lung muscles. Being on a vent, your lungs get weak & because the vent is doing the work for you & you have to rebuild them. His lungs are getting better. They said now he is leaning toward the winning side of the battle. We decided, once they got him off the vent, if something happens to where they would have to intibate him again, we will not do it.

Its so hard to see my Dad like this. It kills me. Every second of the day, I think about him & I'm so emotionally unstable, It's not even funny. One second, I'll be fine, content, watching a movie, painting, anything to keep my mind off of things, then the next I'll be crying so hard I can't catch my breath, the next I'll be raging on screaming at something or someone. I went to make a turkey sandwhich the other day & I went to cut a slice of french bread & I had just bought it 2 days prior & it had green mold on it & I was like wtf man??? I looked at the date & it was past date so I got mad & threw everything in sight away from me then got mad cuz I had to clean it up.
Right now, I'm dealing with something that I've completely ignored my whole life because I never could prepare myself for the day I lose my dad because I can't handle it. My Dad is my world, my everything. No doubt in my mind I would take his place right now & if I knew of a way to get him better quickly, I'd do it & I wouldn't care what it took to do it. I know he's older & he's lived his life, which I'm keeping this all in consideration when making his choices, I will let go, I don't want to but I will not let my Dad suffer. It's hard to know you have to let go of something that you want to cherish forever & I hate the sick fact of to make things better, you have to let him go. It's just so hard. I'm trying not to be selfish & make decisions as if I were in his shoes & I'm trying to do the best I can, but I don't know if it's good enough. No matter WHICH choice I make, I will ALWAYS wonder if I made the right choice. He doesn't look like himself at all & he's got so many wires & hoses coming out of him, I don't know what does what, what goes where & what it does. Right now I feel emotionally & physically drained. I can't focus on things & I'm as mean as ever & I'm trying hard not to be & after I lose him whether it's tomorrow or in 3 years, I'm scared I will change as a person. Right now, nothing makes me laugh or smile, I don't get excited when I see or hear a nice vette or camaro, I eat food cuz I know I need food, but it doesn't taste good, things that smell good, like fresh cut roses don't uplift my spirits like normal, things are all out of whack.
I don't know what to do, so I pray. I pray for everything to be ok for everybody no matter what & for God to do his what his will is. If it's time, take him, if it's not get him better faster. I know that wegeners disease takes time to fix & he's older so that doesn't help but at this phase, it's like time doesn't move. The seconds of each day don't go by fast enough. I've never in my life felt how long a day really is, not even when I've been in the most pain every & every second feels like an hour, it's worse than that. I want to know that my dad isn't in pain or suffering & moving forward or to know in my heart that he is safe with the Lord, I don't want to accept anything in between.
Thank you for listening, It helps when I get what I feel out of me. I sit alone all day & don't have anyone to talk to, so it just drives me nuts all day.
​

 

I am sorry you are having to go through this. You are always in my thoughts and prayer's. I know how strong you are, I bet you could even surprise yourself. Wish we were closer so I could give you a squeeze!

 

Laura,
I just saw this... Your family is in my thoughts and prayers... You will get through this...No matter what the outcome... Your faith & your strength will hold you up in the end. Hugs to you from a too many miles away...

 

This morning we all had to go in for another family meeting & it was with a Dr that was seeing Dad that specializes in chronic illnesses & "end of life decisions". We learned today that his lungs were still making baby steps forward, but they found 2 new virus' in his lungs. His immune system was at an all time low & the 2 virus' they found were things that they usually see in cancer patients at the end of their chemo treatments & it's cuz their immune system is just trashed after the chemo. Well the dr said that it would be a hard long battle from now on & he probably wouldn't be able to live without the ventilator & he was never going to be able to come home. We discussed things & we know that if Dad were here & was able to choose what to do, he would choose to just go with the Lord. For how hard he would have to fight to overcome everything & what quality of life he would have had, he wouldn't have wanted that. He was also getting dialysis too. We spoke & we decided that we needed to respect Dad's wishes & take him off of everything & let him go.
He was taken off of everything & they gave him morphine & adavan, Idk what else, but everything he needed to be comfortable around 630 & he passed at 930. It was hard to let go & I've broke down multiple times, but I'm truly waiting for reality to set in. I wanted him to go as soon as he could because it was killing me wondering how much he was truly suffering. It's been a hard long road but I know Dad is with my mom again & they have both waited a long time for eachother. I hope they are sitting down holding hands & catching up with eachother right now.
Thank you for all your support thru this. It has been hard & I know that the hardest part is yet to come but I know that I have support from great family & friends. Your comments truly did help me get thru all of this & I'm thankful I do have great support cuz I need it! Words can't explain how thankful I am for you all.

 

Im very sorry to hear this I know he is in a much better place but I also know how much it hurts not having them around as well. I will be praying for you and your family and as always if you need anything dont hesitate to give me a call.

Love ya sweetheart.

 

Laura,

I am sorry to hear about your father passing, You and your family will be in my prayers. If you need anything please let me know. I know exactly what your going thru and feeling, having recently been thru this exact experience with my father just a few years ago so if you want to talk dont hesitate to call me anytime.

Keep your chin up sister and your faith strong. time will help heal and we will all continue this journey together.

 

Trully, very sorry to hear this. It's the hardest thing to do, letting go. But he is happy and pain free now. And although today is a dark day, the days to come will get brighter and brighter.

Keep that head up and stay strong.

 

Laura may God be with you as you adjust to his leaving. I will pray for you from time to time.

 

I am so sorry Laura. You and your family are in my prayers.