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this is wonderful news!! that first wink mean a LOT doesn't it??!! :)
 

sandracvrt

Well-Known Member
well I spent more time with Daddy today... this morning and again this evening... he's been breathing on his own since 9 a.m. this morning, just on pressure support... but with the tube still in its the equivalent of breathing through a straw... so this evening he was EXTREMELY agitated, mad, etc... they finally turned the vent back on because he was just soooooo tired from breathing on his own through the vent tube... his temp was down to under 99 for most of the day... his sedation is WAY down, and the plan is to remove the ventilator tomorrow... I imagine his comfort level will skyrocket after that! General surgery still doesn't feel he's stable enough to undergo the gallbladder surgery, but pulmonary doesn't want to continue leaving him on the vent... so if/when they schedule the gallbladder surgery, they'll just reintubate for the procedure....

thanks to all of you for the continued prayers... I truly didn't think Daddy was going to survive last week, and I think all of your prayers have pulled him through this!
 

faerywings

The Loopy-O
CHEERY O
Sandra, *hugs and dances with ya!!*
What wonderful news!!!!!
Still thinking the best thoughts for you both.

How are things with your Sis now?
 

sandracvrt

Well-Known Member
How are things with your Sis now?

She was mostly unpleasant when she was here over the weekend... her mad spell seems to be finally dissipating though... she's coming back tomorrow and then she's coming with Mom on Friday night and spending the night... I won't say she's completely over it, but she's not as cool as she was this past weekend!
 

sandracvrt

Well-Known Member
Daddy has officially been removed from the vent as of this morning! He's crabby though... they had him on just a regular oxygen mask, but his O2 saturation levels dropped too far and they had to put him on a by-pap (sp?) which he HATED... apparently he has ventilator dependence - his lungs are being lazy because for just over 10 days the ventilator has been doing all the work... so he'll have to go back and forth between the by-pap and the mask until his lungs start doing the work again...

He was on just a mask for an 1.5-2 hours today, then he went back to the by-pap when his levels dropped... they have taken him off the sedative and his morphine because those can repress the respiratory system... when I checked this afternoon they had just moved him back to the mask, but he's struggling against the restraints trying to pull out his feeding tubes... he's got some skin break-down that they're treating where he's laid in bed so long, but once he's been weaned from the by-pap he'll be able to move around more and hopefully that will get better... He still has some fluid on his lungs so they're giving him lasix (sp?) to help him get rid of the fluid...

On the whole he's doing okay, although he's very frustrated and angry... he wants all the tubes and by-pap gone, and we just can't get rid of them yet... but at least he doesn't have the tube down his throat... we just keep reminding him that we have to take it one step at a time, despite the fact that those steps might not make him happy!
 

clarabear

always chatty at the O!!
Him being annoyed by all of this is a such a good sign in itself. It means he's got plenty of fight left in him yet. Thanks for keeping us updated.
 

katg1006

Well-Known Member
(((hugs))) Sandra - I am so glad to hear it's a step in the right direction!! Yes I think the anger will help him - fuel his fight to get better and out of there :)
 

LindaPete

Well-Known Member
Sandra - Great news! Hopefully your dad will put all his frustrations into fighting to get better! Being off the vent is a huge step in the right direction! YAY! So happy for you!
 

sandracvrt

Well-Known Member
how do you all keep your faith? Chris - where do you find the strength to believe that God is there when your family struggles with Lyme disease?

If you wonder why I ask this question, it's because I don't know that I have any faith left... if there's this all-knowing, all-powerful being then why do good people die from horrible sickness, suffer horrible tragedies? Why is there so much hate and anger in the world? Why is the economy is such horrible shape and His people suffering?

I got a call last night at midnight about Daddy... he had to be reintubated, and I'm being fed that this is often a necessity... while yes, the ventilator helps Daddy to breathe, and I'm grateful for that I also see his dependence on the ventilator increasing, and every time they reintubate the risk of injury to his vocal cords increases... so if God is there, why do I feel like he's abandoning us? How much more does Daddy have to take before God decides it's enough and he deserves to be healed? How can I walk back into that hospital and watch a machine breathe for him knowing that with every breath it takes for him it could mean he will never come off the vent? How can God give you hope and then in the next breath snatch it away from you again?
 

faerywings

The Loopy-O
CHEERY O
((((((((((hugs Sandra)))))))))) I am so sorry, I know I can say 1 step fwd, 1 step back- but progress is being made..... and I am sure it is.... but that doesn't help very much. And I am sorry for that :(

As for faith......... I could write a book on it. haha. But for me, it is hard to compare. I don't have the same "faith" as you... I mean, I don't believe in a traditional God like you and Sally do. I don't have the same faith in prayer. I beleive in a "generic" god, a Universal force.... and whenI pray it it more of askingthe Universe to do what it sees best.

As for having Faith with the Lyme and finance and all of the other struggles we are going through, I have Faith in that it will work out for the best, that life has lessons for me, and that while I might hate them, they make me a stronger and better person. For me, that is my goal.
My faith/belief set forces me to focus on the day to day, on the power of myself to make it the best I can. It is soooo hard. You hear it in my posts. There are so many times, I *wish* I had the belief in prayer and the faith that you Sally, Joslyn, Clara-- all of you have in God and in prayer. And I believe that for you all-- that faith in God is what makes you so special.

I know many people go through a crisis in Faith at some point. And some lose their traditional belief, some find a new one, or some are reborn and refreshed by their origianal Faith.

I hope and pray for the best of everything for you, my friend. Sometimes, IMHO- the faith and strength comes from inside. If you believe that you are created in God's image-- then you know it is in there!

Be strong darling.
You can do it. I have faith in *you.*
 

Myoldanlac

I Love TaylorMadeDesigns
Sandra, I'm so sorry that you and your family are going through this. A dear friend of mine just watched the same thing happen with her mother recently. The results unfortunately weren't what they had hoped for. But I know that they all stood strong beside their mom for the last 30 days of her life. It was incredible to watch really, the support of each other and love for their mother kept them all going. Faith is unseen darling. It's trusting that things will work out ok. The bigger key is trusting that God has a plan and that although it might not be want "we" think is best, it's what He knows is best. When we accept God's plan, whatever it may be, peace will come. Trusting in Him, or as in Chris's case that it will be ok!!

((hugs)) Hang in there girl.
 

t_a_l_i

Well-Known Member
Hugs sweetie. This is such a hard thing to face.

I am not one to talk about faith. Mine has been tested and I have not recovered from that and do not know how to come back from it, not yet anyway. For me, losing a baby tested that faith. It is something I still do not understand. Hearing that God did it for a reason does not make the pain go away, in fact it makes it worse and makes me question Him.

All I can tell you is that in the long run, no matter what happens, you aren't alone.

((HUGS))
 

clarabear

always chatty at the O!!
Oh Sandra!! Big hugs to you. I can only imagine what you must be going through. I by no means have the big answers to faith and my strong belief in God's will. I ahve a little story for you and maybe it will help and maybe it won't and if you don't want to read it, I totally understand. But I want to share my little story of faith and how it got stronger in the worst of times.

I was struggling with my beliefs. I had started going to church about a year before but I wasn't growing or increasing my faith at all. I had been going to my church for about a year and joined a small group hoping to learn a little bit more about all this "God Stuff." This was in September 2007. On October 7, 2007 I got a call from a girlfriend of mine that our friend Casey had been on a plane with 9 others that was flying back from Idaho from a skydiving event and had lost contact in the early morning while flying over the Cascade mountains. When I heard I was originally paralyzed by this but eventually I got it together, asked my husband to help with the search and rescue (the plane hadn't been found at that point) and we got in the car and drove to White Pass. As soon as we got there we found out that everyone was meeting in the lodge for an update on the search. That is when we got the news that they had found the plane and there were no survivors. While I was sitting there holding one of my best friends hand I questioned God. How could he let these wonderful 10 people just die in an instant. In a freak accident. There was a 19 year old girl, young men. My friend Casey was 30 and one of the older ones on the plane. Casey was awesome. One of those people you love and want to be around. He just makes you feel good. So here I am questioning my faith and God place. Then I realized that God is not there to create miracles although that does happen. Sometimes his will is to comfort us in our times of distress, or help strengthen our bonds with others. My husband does not believe in God. He went up on that mountain and was on a retrieval mission essentially to collect the remains. I'm sure you can only imagine the things he saw up there. When he came back he told me that they weren't allowed by the crash site and they were collecting debris and personal affects and things like that. That was not the case. He filled body bags with whatever they could find. Like I said, he doesn't believe in God but God is the only way that he could deal with that.

Now, God's will rarely makes sense at the time but often after everything is said and done, whether someone gets sick and recovers, doesn't recover, or whatever else life throws at us God's will is done. It just doesn't always make sense at the time. It is horribly hard to accept that some things are God's will but there's not much to do about it. I have watched God work some things out while other times instead of working things out He has strengthened bonds and me and others stronger.

I am so sorry you are having to go through this and I continually pray for a good outcome for you and your dad. I really do hope that is the plan for you. But if it is not I can guarantee you will eventually find good things that came about because of the situation. Closer bonds to your family, you striving to be a better mom (I am not saying you are not a good mom, please don't take it that way), a better wife, someone who wants to live life my fully, or whatever it may be. Whatever the outcome of this you will be better for it and you will need God's guidance on your future. Try not to throw your faith out the window because there will come a day when you will need that faith and time with God and will feel lost because you no longer feel comfortable with it.

I am sorry to be so long winded. I can't help but share my life with others and I am only trying to help. I just wanted to let you know that faith and God's will do not always if ever make sense. Love you girl!! You are tough and you will get through this and you will be the rock that gets your family through this time also. Right now that seems to be your purpose...to keep everyone else together. It is a tough job but it sounds like you are doing amazing.
 

clarabear

always chatty at the O!!
wow!! I just saw how much i wrote. Please please nobody think I am trying to preach at anyone, just sharing my thoughts. I love that everyone has different beliefs and value systems. That is what makes us all unique and lovable.
 

cellomom

...loves her some "O"
Ohhhhh Sandra!!! We hear you, hun!! and we are here for ya!!! First of all, breathe, darling, just breathe!! Even that first breath can be the hardest!

Second, I've been there!!! Most of us (if not all...) have been where you are, terrified of losing someone or something that is more than precious to us!! I know I've said this more than once or twice (or a hundred times!!), but the picture of all of your Ofamily holding you tightly is a powerful image!

Third, I can tell you the story of losing my daddy or my daughter recovering from death, but this isn't about me. It's about you and the One who loves you and cares for you. No matter what, He will not leave you comfortless. You may not feel anything right now, but I know for a fact that He is whispering your name, He is calling out to you, he is singing over you, he is comforting you!! Right now, you don't have to do anything, but just be...

Fourth, I am personally a practical person. I need practical ways to "get through" things. Most of the time when I present a problem to Mr Gorgeous, I do need him to fix it. But sometimes, I just want him to listen and hold me. After 18 years, he's learning which time is which! So, first of all, know that I am "holding" you tight!! (see above the picture of your Ofam surrounding you and your daddy!!). And second, I'm going to tell you that if you started this journey as a believer (or even if you didn't), one of your best faith weapons is the Bible. I cannot tell you how many time my soul has been saved by reading a simple line that says, "I will not leave you comfortless!" straight from His mouth!!

So after saying that, and at the risk of being politically incorrect and posting scriptures on an open forum, I'm going to do just that!! These for me were weapons to get through the intubation of my youngest:
Psalms (the entire book!!) mainly 31 and 34
and my alltime fave: Matthew 11:28-30 - He wants you to take his easy burden and he'll take ALL of your worrying!! He will "find rest for your soul!"
At the risk of being even more obnoxious, I wrote a song based on that scripture...you can hear part of it (enough to get the point!) HERE!!

I, too, appreciate what everyone has said, and I want to reiterate that we are all searching! We all have really bad days filled with hopelessness, but we are all NOT ALONE!! that is one thing that makes us such a wonderful family here!! So, Sandra, keep searching...and keep believing...
 

petey111

Well-Known Member
Sandra - I have been where you are. And I know there is nothing that we can say that will truly help right now. Just hold on and we'll be here for you no matter what.
 

sandracvrt

Well-Known Member
thanks everyone... I'm just really struggling right now... your support means everything!

Dad seems to be okay with being back on the vent... I've talked to his pulmonary doctors, and they're going to run some tests to see why he couldn't tolerate staying on the by-pap... they said they would probably try to extubate again on Monday so we'll see!
 

faerywings

The Loopy-O
CHEERY O
We are so totally with you hon, sending love and strength as much as i got!

And not to hijack the total thread, but I ****love**** that all of us can express our faith and be so honest and open with each other.

Sally you said you didn't think it was PC, but I am glad that your posted Scripture. I may not have the same belief in where it originated, but they are words of wisdom and inspiration. So Ia m glad that you did!
Clara, I loved what you wrote- thank you for sharing such a personal experiece.
Tali- I know that you are not alone either in how you feel.

love you all!
 

kehfrog

Well-Known Member
Sandra,

I'm sorry. I'm praying for you and your family. I have no words of wisdom for you, just hope that you'll find your way and that your Faith will show itself to you.

Karen
 

LindaPete

Well-Known Member
Sandra,
Garth Brooks recorded a song several years ago called "Unanswered Prayers". The lyrics talk about how sometimes God doens't answer our prayers the way that we wish he would. I dealt with my father's death coming up on 10 years ago now. I remember calling our minister before I flew out to be with my Dad and Mom. I told the minister that at this point, I was unsure what to pray for, that it didn't seem realistic or logical to pray that he would live. I knew that my parents had a living will - basically an order to not prolong life with artificial means. Dad's brain waves were silent. At this time in my life I had a lot to make peace with. My father had not spoken to me in 9 months - I was in the middle of a nasty divorce (is there any other kind) and my X had my parents convinced that I was mentally unstable, should be institutionalized and was an unfit parent. My Dad had always been my hero and my biggest fan - until my X got to him. I was mad at God, mad that my life was a mess, mad that I had lost my Dad's influence in my life, mad that everything I loved seemed to be being torn apart. So I prayed, still mad, but prayed for peace and healing. I sat and held my Dad's hand while he died. He and I the only ones in the room. No one else had the strength. In those moments I said all that I needed to say, prayed for everything and everyone I've ever known and loved. Since that experience, I have vowed to never leave anything unsaid. If I love you, I tell you, right when I am feeling it. I don't ever want to have an experience of estrangement in my life again. Time is too short and too precious.
So the long and short of my ramblings is that we each find our own peace and faith in a variety of ways. Make sure those you love know it every day whether it appears that they are listening or not. We can't control or even guess how or if our prayers will be answered. I just try to believe that my Dad is there for me in a different way than before.
Cherish the time you have and try to let go of some of the worry. Breathe.

P.S. Love you!
 

LSlycord

Well-Known Member
Sandra, I'm so sorry for what you are going through right now. And understanding that sometimes God seems far away when you are in the midst of heartache, please know that I am lifting you and your father up in prayer. I think that is what we can do for each other...when one of us doesn't have the strength to pray, others do!
 

sandracvrt

Well-Known Member
Sally and Chris - all I can say is I love you both!

Clara - thank you for sharing your experience with me (us)...

LindaPete - thank you for sharing your story as well... I love you too!

Linda, Karen, Sara, and everyone - thanks to all of you...

Today's update: Daddy had to have another procedure today... during his CT scan, the doctors found what they thought was a pocket of infection (bacteria)... it had formed a rind around itself which meant that antibiotics couldn't reach it to kill the infection... the only way to remove it was surgery or a chest drain tube (which is slightly different from the one he had after his lung surgery)... since he's not ready for surgery, the chest drain tube was the least invasive... it was inserted this morning, but at this point is only draining off blood, leading the doctors to believe it may have been a hematoma instead... specimens were collected so they'll know more after the tests... but they feel this is the reason we haven't been able to completely get rid of his fever...

Sometime this week, they will probably do a tracheostomy (sp?) to try to wean him off the vent... in this procedure they will make a hole in his trachea and insert the ventilator tubing through that, removing the tube from his throat and allowing them to switch more easily from the vent to just breathing on his own and making it easier to wean... after he's weaned they just cover the hole with a bandage and the wound heals itself... in the meantime the drain tube also seems to be helping with his bilirubin levels thus relieving the jaundice...

That's about it for now!
 

sandracvrt

Well-Known Member
I talked to Daddy's nurse this morning... she said he's on the edge of not being jaundiced anymore, which means the chest drain tube is also taking care of the jaundice since it's getting rid of blood... his nurse Maria said that his night nurse had turned his sedation up to 5/5 so he could get some rest, but it's back down to 2/2 and he's already been awake and winking at her this morning..

Dr. Kakish, one of his pulmonary doctors, rounded this morning and has ordered a new, stronger drug in the lasix family to help with the pulmonary edema (fluid) in his lungs... he apparently thinks that Daddy is only on the vent because of the edema and his thoughts are once the fluid's gone Daddy won't need the vent or the trach which would be awesome... so it sounds like the plan is to give him this new med, and try to extubate in 2-3 days! the chest drain tube will remain in place until it stops draining... now we just have to hope there are no other setbacks!
 
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