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 midnight...so 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 still..it 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!

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 day...so 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

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

Great weekend!

This weekend was fall visit at Oklahoma Christian University! There were a ton of juniors and seniors from Memorial Road that went! On Friday during the day you could go to chapel, some classes, and tour the campus. I didn't go to all that though. I went to dinner at OC then we took charter buses to downtown OKC and they had a Summer Singers concert by the canal. We got ice cream and it was perfect weather! We were suppose to go to the OKC bombing memorial to have a devotional, but it started raining. So we went back to OC and had the devo there. After the devo we went to On Cue to get an icee then we went to one of our friend's dorms. My friends spent the night in the dorm, but I decided it would be better if I didn't stay the night. Saturday my friends and I went to lunch under the pavilion at the campus and heard the New Reign group sing! Then we went to Freshman Fanfare. It was a really fun weekend and it was perfect weather!

Alex and I at OC

We are meeting with the surgeon on Wednesday afternoon. They said that once we meet with him, they can usually get me into surgery really soon. I so ready for the PICC line to come out! It hurts all the time now. I think the port will be so much better!

I'm a little scared of the surgery because nothing knocks me out. I mean nothing. And I've been on some pretty strong stuff before. I'm scared that I will still be awake when they do the surgery! But the anesthesia is a lot stronger than any medicines that I've taken. It still worries me though..
"When I am afraid,
I will trust in you.
In God, whose word I praise,
in God I trust; I will not be afraid.
What can mortal man do to me?" Psalm 56:3-4
"The Lord is my light and my salvation—
so why should I be afraid?
The Lord is my fortress, protecting me from danger,
so why should I tremble?" Psalm 27:1

Crazy Day.

I just got home from the doctor. We had to go to my primary care doctor for a lot of things. We got the results of the sleep study and it showed that I stopped breathing a couple times but not enough for sleep apnea, which is good. It did show that something was causing me to wake up 6 times every hour. He said it had to do with my legs. My primary care referred me to a sleep specialist to see what is going on. So I had to get blood drawn today for the sleep specialist to look at. I have horrible veins. I got to the lab today and asked if they could use my PICC line. Of course they said no. They began to look at my arms to try and find a vein. I had to tell them where my veins were. I know, it's crazy that I have to tell them where my veins are. She stuck me at least 4 times, probably more. It took 45 minutes until she gave up and told us we had to go to the ER so they could draw blood from my PICC line. Thankfully another nurse came in and said she could take it from PICC line. My arms are going to be so bruised!

We asked the doctor about the rash on my back that has been there for over a month. He said it's just a virus that has to run its course.

My PICC line has been in for almost 7 months which is a long time. Everyone says it's the best PICC line they have seen! It has started to hurt all the time which means it needs to come out. We have talked to several doctors and we decided that I need a port. A port is under the skin right under the collar bone. It can last for years and is great because it's under the skin! The port will let me continue to do IVs at home! The doctor referred me to a surgeon at Edmond hospital and said I can hopefully get in to see him next week. When I have the surgery, he will take the PICC line out and put the port in at the same time! I'm ready to get the PICC line out!

In the doctor's office they had the radio station Klove playing and one of my favorite songs came on while they were trying to get blood. It's I Will Rise by Chris Tomlin.

"There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say, "it is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

And I hear the voice of many angels sing, "worthy is the Lamb"
And I hear the cry of every longing heart, "worthy is the Lamb"

"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever." Psalm 73:26

Laughter is the Best Medicine

I'm finally getting over this upper respiratory infection! I had a really hard night last night though. The pain was worse than normal. My joints hurt so bad. Right now the worst pain is in my knees and elbows. Last night nothing was helping the pain. I took my pain medicine which usually relieves the pain some. It didn't do anything last night. I read until about 2am then it went downhill from there. I was hurting so much and just wanted to go to sleep. At 4:45 I took another bath to help the pain. It was the fourth bath that night. I finally fell asleep at 5:30 but still woke up a lot. It was such a long night.

Right now I'm doing an IV and later I'm doing a homeopathic pain medicine through my PICC line called an arthritis push.

These are some funny things about everyday life with Lyme. You have to learn to laugh at all the silly things that come along with being sick.

"You Might Have Lyme if...

-You know what LLMD (Lyme Literate Medical Doctor) means, and you have one.

- At an appointment with your LLMD the nurse has asked why you are "all dressed up" when you wore sweat pants without holes in them instead of PJs to your appointment.

- Showering is a two hour process with a three hour recovery period.

-Some days are "shower-optional".

-The happiest day of your life was the one when you were diagnosed with Lyme.

-When you were diagnosed with Lyme you cried, shouted, or hugged your LLMD (which was slightly awkward for both of you).

-They know you by name at your local ER.

-You have more pills in your closet than a drug dealer.

-Your pain management specialist has informed you that your regiment of painkillers should be enough to tranquilize a horse, but they have little to no effect on you.

-You can't sleep even though you're always exhausted. See above for horse tranquilizer dilemma.

- The list of foods you CAN'T eat is longer than the list of foods you can.

-Your BMI is so low that you legally couldn't be a runway model in approximately ten countries.

-You have mysterious bruises, despite spending the majority of your day in bed.

-You (or your mom, dad, or caretaker) has come thisclose to having a fist-fight with a nurse or doctor who wasn't being sensitive enough to your needs.

-You bribe your home nurses with candy so they'll show up on time and keep the poking to a minimum.

- You cry if you have to go away for the night and realize when you get there that you forgot to pack the Glad Press 'n Seal wrap. (for showering with the PICC line)

-You have a PICC line, and were initially paranoid about keeping it sterile when the doctor who put it in told you a bunch of horror stories about sepsis, but now you don't even usually remember to cover in in public.

-You are totally un-phased by people staring at you in public. You suspect it might be due to your wheelchair, PICC line, Michael Jackson style surgical mask or something, but who really knows?

-You laugh when you and another Lyme friend simultaneously have to go to the ER, and swap amusing stories when you get back.

-Your favorite day of the week is "dressing change day" and you (politely) demand that your nurse scratch your arm with gauze for as long as possible.

-You can't watch commercials because of the sudden changes in light and noise, and you think that sort of thing should probably be illegal.

- Your friends no longer think its odd for you to randomly burst out laughing and/or sobbing.

-You've also devised tricks to scam your insurance company to pay for rejected medications.

-Your LLMD is programmed in your phone and under recent calls all too often.

- Your nurse gives you her personal cell number, and calls you just to chit chat.

-You look forward to having wheel chair races with the next person up to the challenge!

-Your sister goes to get her picture taken and someone says “say cheese” but she says “ LYME DISEASE!” instead.

- You could probably draw your own blood. And instruct the nurses which vein to use.

-When you can read your blood work better than your PCP, nurses, and most medical students.

-Going to the doctor is considered an outing.

-You are able to diagnose other Lyme patients before 20 specialists can.

Add LOTS more, everyone! Every case of Lyme is different, some are more severe than others, but I hope we can all have a giggle about its quirks while we're working to get well. We can beat this! Hope this puts a smile on your face!"

"He will once again fill your mouth with laughter
and your lips with shouts of joy." Job 8:21

Hard Week

The doctor finally called us back and said I have a virus. I've been feeling really bad and couldn't even go to church Wednesday night. It's going to take a while to recover. So I've been doing IV fluids and breathing treatments every 2 hours. I have a rash all over my back and we're not sure why. It doesn't itch or anything, it's just there.

Several people have been asking about my PICC line (peripherally inserted central catheter) and IVs at home so here's some pictures and details. The PICC line goes all the way from my arm to my heart through a vein. One PICC line can stay in up to a year if it is well taken care of. Most people have theirs 4-6 months. It can't get wet at all, which makes showering very difficult. When I get the PICC line out it will be great to shower again without having to wrap my arm in plastic wrap and tape and hold it above my head.

I can start the IVs and everything by myself, which is great. Not very many people get to become nurses at the age 16..try not to be jealous. Ok, real nurses do a whole lot more than I do.

Everyday I have to flush it with saline and heparin. An IV takes about 3 hours. Sometimes I do 2 IVs back to back so that's 6 hours. It's great fun, trust me. When I'm not using the PICC line, I wrap it up in a mesh wrap so that it doesn't get pulled out. I've had a few times where it has gotten caught on something and almost came out.

Flushing it with saline

All hooked up to an IV.

Flushing it with heparin.

Lots of appointments..

There has been a lot going on lately. We found a doctor in Seminole, Ok that treats Lyme with both conventional and natural medicines. My appointment is next Wednesday with her. We're praying that she really does treat Lyme and actually knows something about it.

I'm going to a pain management team at Children's hospital on September 8th. They said that they treat tons of teens with Lyme and they understand the pain and lack of sleep in a Lyme patient. The pain management doctors are also the anesthesiologists for Children's. They sounded really helpful!
We're still waiting on the sleep lab results.

My homebound teacher called today and I'm starting homebound again on Thursday. She'll come to my house once a week to answer any questions I have or help with anything. I will do all my work online through the school. They have been really helpful and encouraging.

My home nurse still comes once a week to change the PICC line dressing and take my vitals and everything. My PICC line has been in for almost 6 months so it's almost time to get it out. We're trying to decide what to do next. Not doing IVs is not really an option. Our choices are another PICC line or a port. I pick the port. It's a device that is inserted into the upper chest and goes to the heart. The nice thing about a port is that it is under the skin and you can't see it-unlike the PICC line. The port can also be left in for years. But you do have to have surgery to get it put in. We are hoping that the pain management team could order the port since I don't really have a doctor that can order it. Plus, they would be the ones we worked with anyway since they do the anesthesia for surgeries. We are just looking at options right now.

There is a really cool website where you can make something with words and print it or do whatever with it. Mine is hard to see, but there are verses and different words. You can click on the picture to see it bigger. Here's the website:

http://www.wordle.net/

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me." Micah 7:7

Another ER trip...

Last week was a pretty good week. I went to visit church camp on Thursday! That was so much fun!! Saturday was a good but busy day. I went to a party for someone at church. We played lots of games outside and I did too much... I didn't sleep Saturday night so Sunday was a really hard day. I was in a lot of pain and was so exhausted. I did get to go to church so that was great! Yesterday I was able to rest so I was doing a little better.
Around midnight last night my PICC line started itching and hurting like crazy. I took some Benadryl and got to sleep at 1:30. I woke up at 2:30 because my PICC line was so much worse. It was an unbearable itch which made it hurt. I tried putting an ice pack and heating pack on it. Nothing was working. I went and got my dad at 4 and we decided to change the dressing. That seemed to make it worse. My mom got up and there was nothing else to do except to go to the hospital. We got to the hospital at 5:30 and my favorite nurses were there! The doctor gave me some steroids and something else instead of Benadryl. It seemed to help immediately. They sent me home at 6:30 this morning and I was able to go to bed. I just woke up and my nurse came to change my PICC dressing again. I started a 6 day steroid pack today so hopefully that will help.
Tomorrow I have an appointment at Children's Hospital with an infectious disease doctor. We're hoping that he will be willing to work with my doctor in Nevada. I will update tomorrow after my appointment. Thank you for all your prayers!

"For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13

Home sweet home!

It is SO great to be home! Sunday was such a wonderful day. Missions Sunday is probably my favorite day at church!!!

I am still doing IV fluids at home every other day or everyday. All my medicines and shots haven't arrived in the mail yet so obviously I can't do them...so sad. ha not! They can take as long as they want to get here!! It is nice to have a break from having a schedule full of medicines and shots.

Yesterday my home nurse came to change my PICC line dressing. Every time she comes we fill out a bunch of paperwork and she takes my vitals. For some reason my blood pressure has been super low for a month or two and my heart rate is always really high. Dressing change day is the best day of the week! Yes it hurts some, but when she cleans it, she is scratching it for you and it feels so good! My skin gets really irritated from having a dressing on it all the time so it always itches like crazy!!! I always ask her to clean it extra good so that she scratches it more...ha!

So yesterday afternoon I started getting a horrible rash around my PICC line. It started itching even more (which I didn't think was possible). I took some Benadryl and that did nothing. I figured out that now I am allergic to the stat-lock, which is what keeps the PICC line from coming out. By last night, there were blisters starting to form and it was a little swollen. I kept an icepack on it for a while. At midnight I couldn't take it anymore. It was hurting and itching so bad. Our only choices were to go to the ER or for me to change the dressing and put some itching cream on it. We were not going to the ER so, I got all geared up with a mask and gloves and started taking off the plastic dressing. I cleaned it with Iodine and then apparently alcohol. I didn't realize that it was straight alcohol until it got in all the blisters. At that point I wanted to scream. Never ever ever again will I do that. I put a new dressing and some cream on the blisters and rash.

I woke up this morning and it has gotten worse. It looks pretty nasty. I won't show you pictures this time..be thankful!

On Thursday I am going to visit church camp since all my friends are there this week! I'm really excited!! It's weird not being at camp. I will try and put up some pictures soon!

Getting Ready for Reno...

Next Monday I will be leaving for Reno, Nevada. My mom is going with me while my dad and brother stay home. We will be there for about 3-4 weeks while I receive treatments. This is my third time to go to the clinic there. While I'm there I'll get at least one IV every day along with lots of other treatments. This time I have a PICC line and I am SO thankful for it! I have tiny veins that like to collapse so usually they have to stick me 3 or 4 times. They even just gave up a couple times and I had to skip the IV for that day. So the PICC line will be so much easier. It may be really hard to keep clean and dry but it's a lot better than having to be stuck 3 times every day!!

This picture is from when I was at the clinic in December. This is part of the IV room.