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

(Chorus)
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"