Wednesday, October 28, 2009

Praise the King

My mom just accessed my port without a nurse helping! So I am done with home care nurses!! I have had a home nurse for the past 7 months. I love them, but I'm glad to be free from them! Today we are leaving my port accessed for a few days so that I don't have to have the needle put in every time I need to do an IV.
This week has been good so far! I went to a Bible study Monday night, and yesterday I got to get out of house after I finished some school work.
At the Bible study we were challenged to have conversations that achieve righteousness, love, and grace. We were also challenged to start sharing what God is specifically been doing in our lives. We are really blessed, but never really tell anyone what God is doing right now in our lives. These are a couple of verses from the Bible study.
"We put no stumbling block in anyone's path, so that our ministry will not be discredited. Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything."
2 Corinthians 6:3-10

"But just as you excel in everything—in faith, in speech, in knowledge, in complete earnestness and in your love for us—see that you also excel in this grace of giving"
2 Corinthians 8:7
"Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone." Colossians 4:5-6
I have gotten a lot done this week! I actually get to go to church tonight!! I haven't been to Wednesday night church in FOUR WEEKS. I have missed it so much.
Praise the King by Cindy Morgan
"Praise Him in the morning
For tall and lofty trees
And praise Him in the evening
For children on their knees
Oh and praise Him in the noon day
For gentle birds that sing
Oh praise Him all ye people
Praise the King
And praise Him for a peaceful porch
And rocking chairs that sway
Praise Him for the rolling hills
Where children laugh and play
Oh and praise Him for the wandering soul
That never lost their way
Oh praise Him all ye people
Praise the King
Praise the King
Praise the King
Let it ring
Praise the King
Praise the King
Praise the King
Let it ring
Praise the King
And praise Him for the blood that fell
And bloomed a rose that day
And praise Him that He suffered through the guilt, the grief, the shame
Oh and praise Him that His tender love will still forgive today
Oh praise Him all ye people praise the King"

Monday, October 26, 2009

Please pray for this family.

This weekend has been very hard for many people. My brother (Landon) is 11 years old and his best friend was over at our house Friday. We got a call that his 2 year old brother had drowned in their pool and was in critical condition.
The little boy went to heaven yesterday. We know that Jesus is holding him. I'm so sad for this sweet family. So many people are hurting for them. They have been through so much.
Landon got to see his friend yesterday. He said that it was really hard to see him like that, and that he told Landon about everything that happened.
We don't know why stuff like this happens. It's not fair to them.
But what we do know is that God keeps his promises. The promises don't take the pain away, but it gives us hope. Hope that we will see him in heaven. We have to have faith that God is always faithful to us.

"Remember your promise to me;
it is my only hope.
Your promise revives me;
it comforts me in all my troubles."
Psalm 119:49-50
Please be praying for this family.
I'm hooked up to an IV right now. The nurse is here and watched my mom access my port for the first time. I think I'm getting used to it being accessed..but it will take a while.

Friday, October 23, 2009

Not what I expected...

It has been a long, hard week! Earlier this week my parents were up until 5am with me because I was so sick. We cancelled my appointment with the sleep doctor since I was sick.
Today my home care nurse came and accessed my port for the first time. It has to be very sterile. You clean the port site with betadyne and alcohol first. Then you grip the port with one hand and stick the special needle in with the other hand. The needle is 3/4 of an inch long and is bent at a 90 degree angle. The needle doesn't go in all the way so part of the needle is just out of the skin. After that you put a dressing over the port so that the needle doesn't come out. Connected to the needle is a tube that you flush the port with and then hook up the IV. Once the IV is done, you flush the line with Heparin and then take the dressing off and pull the needle out.
Today the nurse pulled the needle out and we forgot to flush it was Heparin. So we had to do the whole process AGAIN. It was frustrating.
I'm supposed to get a numbing cream to put on the port site 45 minutes before we access it to help with the pain. I didn't have the numbing cream today and it really hurt. It's not like a normal needle prick. It's not what I expected. Pulling the needle out hurts a lot too. It's just weird and painful.
My mom is learning how to access it so that we won't have to have a nurse come every time. They said we're only supposed to access it 2 times a week. I have to do an IV at least 3 times a week. That means that we are going to have to leave my port accessed for a few days at a time. When the port is accessed, that means that the needle with the tubing is still in and there is a dressing on it. So I won't be able to shower when it's accessed because it can't get wet at all. It is going to take some time to get used to because it feels really weird while the needle is in. I will have to be very careful while it's accessed since part of the needle sticks out. They said that I'm supposed to just tape the tubing to my skin so that it doesn't pull the needle out.
My friend found this Halloween IV bag!! It has fake blood in it and you can drink it! haha I love it!!

Here is what it looks like when my port is accessed. The needle is in the center of the port.

Tonight I get to go to a bonfire at the lake with the youth group girls! I'm really excited!! It will be the first time I have gotten to leave the house this week.
We also decided that we can't go to Disney World right now. So we finally cancelled it.

"The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song."
Psalm 28:7
Whatever Your Doing by Sanctus Real
"It's time for healing time to move on
It's time to fix what's been broken too long
Time to make right what has been wrong
It's time to find my way to where I belong
There's a wave that's crashing over me
And all I can do is surrender

Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly

Time for a milestone
Time to begin again
Reevaluate who I really am
Am I doing everything to follow Your will
Or just climbing aimlessly over these hills
So show me what it is You want from me
I give everything I surrender...

Time to face up
Clean this old house
Time to breathe in and let everything out
That I've wanted to say for so many years
Time to release all my held back tears

Whatever You're doing inside of me
It feels like chaos but I believe
You're up to something bigger than me
Larger than life something Heavenly

Whatever You're doing inside of me
It feels like chaos but now I can see
This is something bigger than me
Larger than life something Heavenly
Something Heavenly

It's time to face up
Clean this old house
Time to breathe in and let everything out"

Monday, October 19, 2009

Too many doctors

I had a good weekend. A couple of my friends came over and I got to go to church yesterday. I hadn't been to church is 2 weeks so it was great to get to go!
Today I had a follow up appointment with the surgeon. He said my incisions are healing well. I told him it still hurts a lot and he said since I'm in pain, from the Lyme everyday, that it will just take me longer to heal from surgery.
Tomorrow I have an appointment with a new sleep doctor. I don't know what that's for. Right now I have so many doctors. I have a Lyme doctor in Nevada, a Lyme doctor in Seminole, a pain management team at Children's Hospital, a surgeon at Edmond Hospital, my primary care, a sleep doctor, and home nurses. That's 7 different groups to keep up with. It's crazy right now.
We're trying to figure out what to do about my port because the surgeon and home care group keep telling us different things. The surgeon says that my mom can learn how to access my port at home. That's the whole reason I got the port put in. The home care group says that my mom can't do that, a nurse has to. So we're trying to figure out what to believe and do about it. I haven't been able to do an IV in 2 weeks which makes me feel worse.
School is so hard. I haven't done any since I had surgery. I learned a whole bunch of new things in algebra before my surgery and now I have forgotten it since it's been so long. It's hard to figure out when to do my school work. Between all the appointments and everything it is stressful. At home, I'm either too sick to work on school, or I feel okay and need to get out of the house.
We're supposed to go to Disney World in Florida next Friday. I'm so excited because I will get to swim since my port is under the skin. It will be great to not have to go to any doctors appointments for a while. I'll have to be in a wheelchair everywhere we go down there. I will also have to do IVs when we're back at the hotel. The good part is that if your in a wheelchair you usually get to go to the front of the lines.

Monday, October 12, 2009

Bring the Rain

Flowers are so beautiful! It's been rainy and chilly ever since I had surgery so it's great to have flowers that are so cheerful! I'm very thankful for the flowers, encouragement, and mostly prayers.

Such pretty flowers!
You can kind of see the bandage on the side of my neck. The ChloraPrep that I'm allergic to is on my face, chest, and my shoulders and the top my arms. They said they don't wash it off because it continues to fight bacteria for 48 hours.

You can see spots of the ChloraPrep on my arms and back. They also left those white stickers on me. I had them on my chest, stomach, and shoulders. They were used to monitor me.

My PICC line is out!! That arm has had a rash for 7 months from the PICC line. I'm ready for it to clear up! You can see the hole from the line in the middle of my arm. It is just a hole..very weird!

These are my incisions. Don't worry, they're covered up with bandages so you don't have to see them! The one on my chest is 2 inches long. I'm not sure about the one on my neck. I found out that the tube that runs between them is right under my skin. I can follow it with my finger. It's so weird!! It goes on top of my collar bone up to the incision in my neck. I'm still trying to get used to the port. I can feel it when I move or breathe..which is pretty much all the time since I'm usually always breathing. The port sticks up from under the skin and it is a circle.
You can also see how red and swollen my neck and chest are. Usually you can really see my collar bone and all the other bones. This was before the hives and swelling got really bad.

Thankfully the hives are getting better! My neck is still swollen from the incision though.

Bring the Rain by Mercy Me
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you oh Lord
My only shelter from the storms
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know they'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus Bring the Rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know they'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus Bring the Rain
Holy, Holy, Holy
Is the Lord God Almighty"
"But as for me, I will always have hope;
I will praise you more and more." Psalm 71:14
I hope you have a great week!

Saturday, October 10, 2009

Outpatient doesn't mean easier...

The morning of surgery my nocturnal body decided to wake up at 3:50am. I didn't have to get up until 5 so I layed in bed and listened to Klove. It was so encouraging to listen to all the songs about God carrying me no matter what is going on in my life.
We left for the hospital at 5:45am. I'm still not sure why check-in takes so took about an hour to get checked-in. They finally put me in my room at 7. The room was really big so my grandparents and everyone got to stay in the room too. Since we couldn't use my PICC line they had to start an IV. They had to take blood too so they had to find 2 veins. The nurse didn't have any problem finding the veins. She actually said that I have such great veins. Are you kidding me?! I started laughing because I couldn't believe she actually said that.
They took me to the holding room at 7:45. Only 2 people could come with me so my parents went. The surgeon and anaesthesiologist were waiting to talk with us. The nurse gave me something to start to relax me. I wasn't in holding for more than 10 minutes. Everything happened so fast in there. They took me to the OR right at 8. When they were taking me to the operating room, it felt like a movie. Everything was white and freezing cold. Everyone had the blue scrubs on and everyone was looking at me being wheeled past. It seemed like everything was in slow motion..I guess the relaxing medicine was starting to work. In the OR, they made me get on the table by myself. They didn't say anything to me, they just put the mask on my face and that's all I remember. The surgery lasted an hour and then I was put in recovery. I woke up after being in recovery for 45 minutes. I woke up in a ton of pain so they gave me lots of pain medicine. The pain medicine they gave me was 10 times stronger than morphine. I was still in a ton of pain though. My chest and neck hurt. It really confused me because the port was put in my chest, not my neck. They finally took me back to my room after being in recovery for an hour and a half. The gown I wore had a place to hook it up to a machine and the machine put warm air into the gown. It was the best part of surgery! It kept me so warm.
Once I was back in my room, I started hurting more. My mom said that I had a bandage on my neck too. So we asked the nurse why it was there. Apparently they had to cut my neck to get the catheter from the port into a bigger vein in the neck. I was in so much pain so the nurse finally agreed to giving me morphine. We tried to get the pain under control for a couple hours. They sent me home at 1:45pm. Since they attached the port to a muscle in my chest, it hurts every time I move or talk. The worst pain is my neck though.
When I got home, I was so nauseous from the anesthesia. Tuesday night I noticed that I was starting to get a rash on my chest. They hadn't washed the cleaning stuff off so i was covered in it. The rash kept getting worse everyday. It's all over my chest, neck, face, arms, and any where else they put the cleaner. Apparently I'm really really allergic to whatever they cleaned me with. Yesterday my chest and neck were so swollen. You can't even see my collar bones. So we went to the after hours clinic last night. They gave me a steroid shot and told me to keep taking benadyrll. After we got home the itching was out of control. I couldn't take it anymore. I was so frustrated. My mom went to a health food store at 9 last night to see if they had anything to help. She got some spray and it finally calmed the itching and pain down. I haven't been sleeping good because of the pain from surgery and the hives all over me.
Since the surgery was outpatient I thought it wouldn't be a big deal at all. I was so wrong. I'm still in a lot of pain and feel horrible. The surgery was bigger than we thought and on top of that I have hives. I don't have my appetite back either. I'm praying that the hives will go away soon and that the incisions will heal fast.
Thank you for all your prayers! Please keep praying for me to recover soon.

Monday, October 5, 2009

Surgery tomorrow

Tomorrow is surgery day. The PICC line is coming out and the port is going in! Check-in time at the hospital is 6am. The actual surgery starts at 8am. Since I had that big PICC line problem Saturday, we don't think they will be able to use the line during surgery. They thought that they could use it for IVs during surgery then take it out when I'm in recovery. But I think they will have to start an IV somewhere. That will work out well since I have horrible veins and I'm not allowed to eat or drink starting at my veins will shrink even more from dehydration. Good luck nurses! I should use a sharpie and mark where my veins are for the nurses so that they might be easier to find.. I don't know when they'll take my PICC line out since they can't use it. I really hope I'm asleep when they take it out. It really freaks me out to think of them just pulling it out all the way from my chest! They say it doesn't hurt but freaks me out.
These are comforting verses about God fighting for His children. God has everything already planned out for me. He knows about my worries even before they happen. He knows what's best for me and he is fighting for me.
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Romans 8:28
'Moses answered the people, "Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The LORD will fight for you; you need only to be still."'
Exodus 14:13a-14
"The LORD your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, and in the desert. There you saw how the LORD your God carried you, as a father carries his son, all the way you went until you reached this place."
Deuteronomy 1:30-31
"your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."
Psalm 139:16
"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
2 Corinthians 4:17
Let the Waters Rise by Mikeschair
Don’t know where to begin
It's like my worlds caving in
And I try but I can't control my fear
Where do I go from here

Sometimes it's so hard to pray
When You feel so far away
but I am willing to go where You want me to
God I Trust You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

I will swim in the deep
Cuz you’ll be next to me
You’re in the eye of the storm and the calm of the sea
Your never out of reach

God You know where I’ve been
And You were there with me then
You were faithful before You’ll be faithful again
I’m holding Your hand

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

God Your love is enough
You will pull me through
I’m holding onto You
God Your love is enough
I will follow You
I will follow You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
Philippians 1:3-6
Here's another one of my favorite pictures from Vienna!

Saturday, October 3, 2009

They know me by name at the hospital...

Today has been an interesting day...I had a good morning just hanging out. My brother is at a church retreat so it's just me and my parents. He is also going to a camp with school on Monday-Wednesday. It's like a whole week of camp for him! So it's been quiet around the house. I decided to do an IV this afternoon. My PICC line has been so hard to flush lately which hasn't been a big deal since I'm getting it out Tuesday. So I flushed the line today and it was even harder to flush. I just ignored it and moved on. I started the IV and less than 5 minutes into it, my chest started burning inside, I couldn't breathe, and I felt like there was something in my lungs. I couldn't stop coughing which made breathing hard too.
My parents immediately took me to the hospital. You can't mess around with PICC lines or ports. You have to do something fast if something is wrong. We got there and the waiting room was full. When the triage nurse saw me she took me straight to a room because she saw how bad things were with me. It was really scary. They got me all hooked up the monitors and my oxygen level was good. My blood pressure was really high though. They ordered xrays of my chest to make sure there wasn't a blood clot or that my PICC line wasn't torn. He also wanted to make sure I didn't have pneumonia. The xrays came back clear which is a good thing! The doctor said since the PICC line has been in so long (7 months) my lungs and where the PICC line is could just be irritated. He said not to use the line anymore since I'm getting it out Tuesday. So they sent me home after a couple hours. I'm glad to not be there anymore! There were tons of people with the flu there.. I used to be in the ER at least once a week for several months. So I got to know everyone there! I love the nurses! They always come hang out in my room and just chat. Except I usually go in the middle of the night instead of the I didn't know the nurses today.
My chest still hurts some but I'm doing a lot better. I'm so ready to get the PICC line out. I just have to wait until surgery Tuesday!
"My soul finds rest in God alone;
my salvation comes from him." Psalm 62:1

Friday, October 2, 2009

God can, God is!

At church I'm on the leadership team in the youth group. I'm specifically on the prayer team. There are six of us who make up the team. Our goal is to help make prayer something that isn't just something we do because we're supposed to. God CAN do anything and God IS answering our prayers. So the 6 of us decided that every night at 9:30 we were going to do a 6 way call to pray together. Since there are 6 of us, we each have a night to say the prayer and the 7th day we just decided who is going to pray. I honestly didn't know how long this would last. But it's been so great!! I don't think we've missed a night for the 2 weeks we've been doing it. We all stop what we're doing every night and share prayer requests and talk about what's going on. Then we pray. I look forward to every night because it's so encouraging to have a group of us that are dedicated to being there for each other and praying together.
We made a bulletin board that is up in the hallway of the youth building that says God Can, God Is. There are sticky notes for people to put prayer requests under the God Can side. Then people can put answered prayers under the God Is side. So if you have any prayer requests comment on here and we'll pray for them! I hope you have a great weekend!!

Thursday, October 1, 2009

Surgery Tuesday!

We met with the surgeon yesterday! He was really great and it was a very simple meeting. He told us what we needed to know and then we were out of there! I like doctors like that.
I'm having a port put in and the PICC line will be taken out. The port will be placed under my collar bone and is attached to the muscle. It has a catheter that connects it to a major vein usually in the neck. Once the port is in, everything is under the skin. All you can see is a little circle sticking up under the skin. To access the port you just use a needle. When it's accessed you put a dressing over it so that it's sterile and that the needle doesn't come out. When your done with the IV or whatever your using the port for, you take the needle out and there's nothing there! So I can shower like normal! No more plastic wrap!!!!!!! The surgeon said that my parents can learn how to do it so we don't have to have a nurse come!
The surgery is this Tuesday! I have to be there at 6am...very early. But the surgery doesn't start until 8am. He said the surgery will probably take an hour. We're going to use my PICC line for the IVs during the surgery then they will take my PICC line out before I go home. Then after I'm in recovery some one will show us how to access the port and everything. Then hopefully I can go home soon!
I love this song!
He Is by Mark Schultz
"Father let the world just fade away
Let me feel Your presence in this place
Lord I've never been so weary
How I need to know You're near me
Father let the world just fade away
'Til I'm on my knees
'Til my heart can sing

He is
He was
He always will be
Even when it feels like there is no one holding me
Be still, my soul
He is

Father let Your Holy Spirit sing
Let it calm this storm inside of me
As I stand amazed
Lift my hands and say

He is
He was
He always will be
He lives
He loves
He's always with me
Even when it feels like there is no one holding me
Be still my soul

Through every fear
And every doubt
In every tear I shed
Down every road
I'm not alone
No matter where I am

He is
He was
He always will be
He lives
He loves
He's always with me
Even when it feels like there is no one holding me
Be still my soul
Be still and know
Be still my soul
He is"

"Jesus Christ is the same yesterday and today and forever." Hebrews 13:8