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

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

You want me to SLEEP like this?!?!

I spent the night at the hospital last night for a sleep study and monitoring. The sleep study area is a part of Children's hospital on the 10th floor that is a little scary.. You press a button for them to let you in and when you get inside it's a long dark hallway that is completely silent. Apparently I was the first one there because it was deserted. We got there at 7:15 and filled out all the paper work and got to my room. The rooms are really nice! They are just hospital rooms that are a little bigger and decorated really nice. Why can't all hospital rooms look like that? And, the shower was a whole lot nicer than the rest of Children's showers, which doesn't make sense because your not even allowed to take a shower during the sleep study. Great planning, I know.

They told me to get ready for bed and they would come back and hook me up. Hook up took about an hour...so I got done with that at 9:15. They wanted lights to go out at 10. What?! I don't fall asleep until 4 am! That is like 6 hours from now.. So they let me stay up "late" and read while they hooked up other patients.
There were wires on my head, neck, face, heart, legs, and stomach. Then I had two different things in my nose and mouth. I had a belt on my chest and stomach that was really tight and almost suffocated me. Oh well, they would have known if I stopped breathing, since they monitor your every move. I also had a pulse-ox on my finger to monitor my oxygen levels.
I was a little freaked out to even move with all the wires and everything. Also, after everything was hooked up, my nurse came over the intercom and made me move my eyes and hold my breath and all this testing so they could make sure they could see me and know everything I did. I asked what button I pushed if I had to go to the bathroom (which I think would have been impossible. Good thing I dehydrated myself yesterday so I wouldn't have to go...) and she said "oh just talk and say something, we can hear everything you say." OH that makes me feel better. So you've heard everything I've been saying the whole time I've been here?! Wonderful.

So lights went out around 11 and I layed there and made faces at the camera. Just kidding, I should have though. It was a long night of restless sleep. How could you sleep being hooked up like that and knowing that they are watching you? This morning all she could tell us was that I woke up a lot. We get the results back in 7-10 business days. When she took all the wires and monitors off, there was a glob of sticky paste everywhere that there had been a wire. That apparently helped hold the wires in place and helped to get an accurate reading. I still have globs in my hair. I hope it comes out easily!

The room was really nice!

Sleep Study

The hospital just called and I'm doing the sleep study tomorrow night. I go to the hospital right after dinner and stay until the morning. So please pray that they will figure something out.