listening

I have learned a lot about listening. And I believe completely that God talks to us through that "little voice" that we know is there. It's not a whisper, it's not anything physical- but it causes physical reactions. It's a feeling... and a thought- at the same time. It all comes at the same time. And as a Christian, I can react to it, or remain quiet. Unfortunately, I tend to remain quiet. When I knew in my soul that momma was becoming critical- and I had thoughts... I did what I could to follow through. But of course, I didn't do enough... and I think about those thoughts now and it all makes sense. God was trying to tell me... but I didn't listen and react like I should have. Why Lord? Why didn't you just slap me in the face? Why didn't you knock me to the ground so that I would follow through on what I knew you were telling me?

I praise the Lord daily that momma is not suffering anymore... that comforts my soul.

no icu

I worked in an ICU for a year and I know that critical patients need continual care. There was no ICU. Just a room. A small, small town room. It just doesn't make any sense to me. "Forgive me momma for not taking charge and forcing them to transport you to a place you felt safe." Forgive me Lord for not listening to my heart.

there will be a day

It's hard. Hard to see life just move on. People laughing.... sitting with their families. The only thing that keeps me standing- is knowing that there will be a day when I see my precious momma again. Life changes completely when you lose someone so close to you.... momma was my best friend. She was the love. I don't wake up everyday with the same feeling about life. It's different now. Everything's different.

handwriting

I didn't notice until recently- after looking for some documents... momma's handwriting was changing....

statement

I am not accusing any particular person or company at this point... but I do have a statement to make. I hate small towns.

antibiotic

That night, they gave momma an antibiotic that made her heart race. It made it impossible for her to relax. Her heart rate was around 160. I didn't know until after, that they knew that the antibiotic would result in rapid heart rate. And the only reason I found out, was because they were talking about how slow the drip was and that they needed to speed it up so it would flow faster so she could settle down. I should have asked... Momma was always nervous about medicine b/c she knew her body.

sweetest voice

Momma had the sweetest voice. She used to love to sing to us. I remember her singing to Lynkon, and rocking him. She loved him soo much. She practically raised him.

The past couple of weeks, she could barely talk without being short of breath. I miss her voice.

trips to the city

Weeks before, momma was trying to get to the city to see her doctors- but the trip seemed unbearable. It would require numerous tanks and every breath was a struggle. She dreaded the trip... but she longed to meet with the pain management doctor, especially. The trip was just too much to think about tolerating. I hated that the city was so far. I hated being in a small town unable to get the care momma needed. Trips to the city just took too long- more than an hour.

It doesn't seem right. It just doesn't seem right...

thank you

I thank all my friends for their support during the most difficult time in my life. Please allow me a few days to return calls/emails/messages. -But please know that your support is helping me through this. God has blessed me with so many true friends. I don't how I could cope without you. "Thank you."

suffering

I do not mean to offend anyone with my honesty. Please forgive me if the words are too much. I speak directly from my heart and soul. My suffering does not compare to momma's suffering. Awareness is very important to me.

The xray

I saw the x-ray that night. I saw how covered her lungs were in scar tissue. She was a fighter. Her body was healthy but her lungs were covered. The scar tissue appeared to be pulling her airway off to the side. I didn't have the heart to tell her how bad it was. I was not ready for her to give up. But I knew... in my heart... I knew.

You know... when your body is healthy, and you can't breathe... it takes a while for your heart to give out. The family watched- she layed there- struggling. Oh Lord, the memory will not fade.

People must know....

I meant for this blog to be private, but I think it is important that people are aware of the suffering of those with pulmonary fibrosis.

My mom, Jo, passed away with this HORRIBLE disease Feb. 17, 2009, at 3:42 p.m., after hours and hours and hours and hours of suffocating.

She was claustrophobic- and not being able to breathe was her worst fear. This fear took her before she was ready to die. Her fear overtook her physical strength to survive. She literally suffocated to death- and I could only comfort her by telling to try to relax. "Breathe through your nose momma. I know it's hard... but you have to breathe. Try to calm down." But she couldn't. She couldn't take it anymore. I must talk about this. People need to know. They need to know that they claimed there was nothing that could be done. They just let her suffocate. She begged for something to take her anxiety. She begged. But they didn't want to give her anything b/c it would slow her breathing. She made me promise her that they would give her something to calm down. It didn't happen soon enough. There is so much wrapped up in this, that I must tell. And I will. I will talk and talk until I know that people are aware. My mother never smoked. She didn't drink. She only loved. She was the most loving, caring person I have ever known. Watching her die the way she did makes my heart ache. Although, I know she is no longer suffering b/c she was saved by the blood of Jesus, but she should not have suffered. I am a forgiving person, but I will never forget those who were responsible for her care- and failed her. I will never forget the little details. I will never forget her begging me... for them to acknowledge her fear. All I could do was hold her, love her, rub her, hold her some more....

"Momma I am sorry I failed you. I am sorry I didn't bring you water when you begged me for something to drink (b/c they wanted to give you a CAT scan)... I am sorry when I did beg for ice chips that I did not make them give you a whole cup instead of a little medicine cup. I am sorry I did not make them give you more medicine to help you relax so you could breathe. I am so sorry....I am so sorry."

I know that I moved back to take care of momma. I just wish that I would have done more for her. She needed me. I am grateful to God that I was able to spend my last year here... but I am also saddened b/c I wish that I would have done more. At times I was selfish. "Sorry I was selfish sometimes momma. You were the most wonderful, beautiful person in the world to me. I love you. I need you. I miss you."

Proverbs 19:21
"Many are the plan's in a man's heart, but it is the Lord's purpose that prevails."

"God, I know you took her home for a reason. I know you have a purpose. I trust you. But I can't help but wish things would have ended differently. I am glad she does not suffer anymore... God... Oh God... I miss her. I can't wait to run into her arms- and Yours. I live for that day. Lord, I live for You."

Revelation 21:4
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."

"Momma- I can't wait until the day that Jesus holds us together in His arms. I miss you."

Yes, she is scared

She might not admit it to anyone else but me, but mom is scared. She is scared to move. She is scared to be alone. She is scared. It causes anxiety which can cause her chest to hurt. Sitting with her silently and reminding her to breathe is the only way for her to cope. She is scared.

Appetite

Mom's appetite has greatly diminished. She does not feel like eating, and asking her if she is hungry is important. Also, making sure the items cooked will be something that she is willing to eat. At this point, she prefers fruits and vegetables and foods that are low in grease. She won't eat a lot, so encouraging her to drink water to rid the toxins is also very important. You know... who wants to eat if you can't breathe!!?!? Being full is the last feeling in the world you want.

Knowing the Machines

Luckily, I have a background working in an intensive care unit so I am familiar with the machines that allow mom to live. But others aren't as aware. Knowing the machines is vital to mom being able to breathe.

Cylinders:

The cylinders are full of compressed oxygen. A regulator sits on top to regulate the air flow. Here is an instruction on how to work the cylinder for those who might need a bit of assurance when it comes to working it.

-Place cylinder in cart.
-Take off plastic and green tag so that you are aware it is used.
-Place regulator on so that the two prongs match with the two holes. Screw in.
-Using the green key, turn the top of the cylinder clockwise.
-Ensure that the dial goes to full.
-To use oxygen, place nasal canala on nose, and turn dial to 8.
-When dial reads empty in red, replace cylinder immediately for emergency use.
-To replace, turn dial to 0.
-Use green key to turn off cylinder by turning clockwise.
-Unscrew regulator and remove.

Condenser:

The oxygen condenser runs on electricity. Should the power fail, the white/black button next to the on/off button should be pushed. The air in this machine is condensed, so it is not forced out the tubing like it is in the cylinder. So you can't hear it coming out as well. You have to feel.

-Turn on power.
-Ensure dial has been turned to 10.
-Ensure water is in canister. The canister should be filled with extreme care b/c they break very easy. The knobs should not be tightened too tight or they will bust and you might not know it until you realize mom is blue.
-Check the tubing to make sure there is no kinks or breaks in the line.


The best sign for knowing if mom is not getting oxygen is to watch the color of her face- especially in the lip area. And if she starts not making any sense, you know there is an oxygen issue.

Mom and Dad

It's amazing what a little scare can do for a crazy, insane friendship. Mom not doing well, has definitely made an impression on Dad. He, in turn, is very helpful and it makes the environment livable- for both mom and myself.

Deceit

It can be deceiving that her attitude seems to be good. B/c once she moves, and she can't breathe... the tears are present.

Walking vs Sitting

Of course, mom opts to sit. The more she walks or moves, the more trouble she has breathing. If I were her I would opt to sit, too. Although, I want to try to motivate her to do things, I also don't like to watch her suffer. When she moves, she suffers. It's hard for her not to freak out when she can't breathe. Then she hyperventilates. I try to calm her down by telling her to breathe in through her nose and out through her mouth. This allows the oxygen from the nasal canala to move through her nose into her body. But... by default she is a mouth breather. And this makes it difficult. I spend a lot of time just sitting with her - calming her as much as I can. Lately it is resorting to tears and questions about "what happens if I pass out from lack of oxygen and can't breathe?" Needless to say... at this point, she probably should never be alone. Last time I went into the kitchen, she immediately yelled for help b/c she feared she was not getting enough oxygen to sustain her. It's sad. My grandpa used to yell for help, too. It's sad.

Switching Oxygen Companies

Recently mom ended up in the hospital with pneumonia. Since then, she has had numerous breathing problems emerge that she is not used to dealing with. It takes a lot now to calm her down so she just relax and breathe and not freak out. We also decided it was time to try to get another condenser to allow her more oxygen flow. Before going into the hospital she was on 5- now she requires 10. In order to get that, we had to call a different company b/c the current company she is using only has one machine that goes up to 10 and another patient is using it. We called another company, who had the machine available, but only delivers the cylinders of oxygen (for portable use) once a month. And they can only deliver 15 per month. So... unless we can keep both companies for the duration, we are going to have a situation. Why do they have to make it so difficult? The woman can't breathe! She needs oxygen! It's that simple! Don't other patients also require oxygen? So many questions, yet no answers. Come on people. What do you think you would do if you couldn't breathe? Just think about not being able to breathe for one second.... just think about it. For her... it's like slowly drowning. And b/c it is fibrosis (scarring)- there is no healing involved. It only gets worse.

Just Surviving

My mother depends on oxygen for survival.

In 2005, mom was diagnosed with hodgkin's disease after a year of being misdiagnosed while going to several doctor's in Oklahoma for lump that was present under her right arm. After chemo and radiation they discovered that her lungs were damaged and pulmonary fibrosis was present. It is uncertain, as told by doctors, whether it was the radiation- or the chemo- that caused the damage. It has gradually gotten worse since she went into remission in 2006. Now she depends on oxygen to breathe everyday. It is quite a struggle, but she battles through it everyday fighting for breath and energy. This is her story from my perspective.