Things to do while getting IVs!

Yesterday I finally got my IV supplies delivered! The last time I had my port accessed was when I was in the hospital for gallbladder problems a week before my surgery. Usually I do IVs 3 times a week but I haven't done any since my surgery. I just didn't want the IV fluid to come spilling out of my incisions because that happens a lot you know. Just kidding, I just kept forgetting to order them. You have to flush the port often to make sure it doesn't get a blood clot. So my mom accessed my port yesterday and I did an IV! I left the needle in my port overnight so that I could do another IV tonight. The IV can take anywhere from 2 to 4 hours. It just depends!

Of course you have to make IV time fun! Here are some things you can do...

You can...leave the IV pole and machine in the living room and just carry the bag while you take medicine!

You can...again leave the pole in the living room because it doesn't roll very well and just hang it on the cabinet door handles over the oven or refrigerator while you cook up a delicious treat.

I mean, who doesn't hang an IV bag there?

You can... play wii with your brother! But you have to be very careful not to rip your IV out while doing intense moves. That would not be good and would guarantee a field trip to see my nurse friends at the hospital.
Notice Squirt (my IV pole obviously) on the left. They shortened the length of the IV tubing so I had to be extra careful and stay close to Squirt.

haha look at Landon's face


You can...take a stroll to the mail box and watch the faces of the people driving by. Then you wave and smile and wonder why they have that weird look on their face. Oh maybe it's because I'm hooked up to an IV...at my house.
You can... have your family bring you anything that you want because it's "too hard" to get things for yourself while hooked up to an IV machine. Make sure and really take advantage of this one!
You can...try to hypnotize yourself by watching the IV slowly drip...
You can...try to beat your record on how fast you can get to the bathroom with your IV pole and machine. Let me tell ya, it's not easy. Those rugs get in the way!
See, IV time doesn't have to be completely boring! I'm sure I'll come up with new things to do! Let me know if you have more ideas!

5/13/10 update

Yesterday was an eventful day! We decided that we can't go to Brazil next Friday because our visa paperwork to get in the country is having problems and my doctor says I can only go if we can take all my heart medicines with us. We are trying to figure out how to get the medicines in the country without them being taken by customs. We are looking at going in a few weeks hopefully.

I did homecare in the morning before the major auto-hem. During the auto-hem I got another clot in my port. It was great fun. So that took a while.

We were scheduled to meet with the doctor at 2. We finally met with him at 4 or so. We went through all my blood work. My platelets are better but still in the low normal range so he said we just need to watch it really carefully.

My cholesterol is high for some reason so he is putting me on some medicine to help that.

I told him how my fingers and toes turn purple and blue and green sometimes. Sunday during church I looked down and my left hand was all purple and green. He said that that means that I probably have Raynauds disease. I don't know a lot about that but it had to do with circulation. I don't remember the connection but that also means that I am likely to develop auto immune diseases. Lyme can cause those. When we mentioned that my concentration is zero and that I have lots of brain fog and confusion, he said that I really need to get stable so that we can try to stop the Lyme in my brain and make sure I don't get auto immune diseases. That means that I have to come back here once I'm stable.

He is sending me home with the heart meds that I have to take everyday either through my port or a shot. I'm also being sent home with homeopathic pain medicine called an arthritis push that we can put in my port or a shot.

This morning I had a TON of testing. We were testing a bunch of medications I will be taking home. Oh my. I thought I was taking a lot of medicine before I came here...ha. My colon, small intestines, kidney, liver, stomach, lymphatic system, skin, and throat are all infected and messed up. Not what we were hoping to hear. So, at home I have this huge list of detox things to do. Once I start it, I will post more about that because I'm still not sure what it is.

After testing I did homecare. Then I did a detox IV. I'm really frustrated with the nurses because 4 out of the 5 days they have to reaccess my port because of some problem. Today he "missed" my port and had to do it again. What in the world?! How do you MISS my port? It's RIGHT THERE. Good grief. After my IV I got my butt shots. Then I had a dark field. That's the thing where they take a drop of my blood and put it under the microscope to see what's going on. There is no Lyme in my blood! Praise God! It showed I'm fighting lots of viruses and allergies and some yeast infections. Nothing too bad showed up on there which is great! It was a long day!!!

Tomorrow is my last day at the clinic! I'm so so excited!!!!!

Here are the shots I take everyday.

Allergy shot (arm shot)

Food allergy shot (arm shot)

Either Glyoxal shot (butt shot) or Placenta shot (we switch off days with these)

Amitripyline desensitization shot (arm shot)

Heart medicine shot (arm shot)

And lucky me I get to take medical food every day...(mixed like a protein shake)

Once I get the LONG list of other medicines I am on, I will share that too! It will take a while to figure out a routine with everything.

I get to come home in 2 days!!!!!!!!!

Tomorrow afternoon after the clinic we are planning on going to Tahoe again for a couple hours and then come to the hotel to pack. Then Saturday night I will be HOME! :)

THANK YOU for your continual prayers and encouragement!!

Another new plan

I'm finally over the flu! It didn't last too long which is great!

On Wednesday I got to get out of the house and we went to my doctor in Seminole. We discussed how everything is going. The plan is for me to start a detox kit and then start more antibiotics. I need to start killing the Lyme bacteria again because I'm having more neurological symptoms. I have constant muscle twitches and my foot has gone numb a couple times. That means that the Lyme is really getting into my brain. We cannot let it spread or get into my brain anymore.

We also discussed what to do since I don't eat very much. I've lost even more weight since I've had the flu. She said hopefully it's just a virus that is making me nauseous and it will go away soon. We're praying that's what it is!

At the doctor I got an IV called a Meyers Cocktail. No it's not alcohol...haha but it is full of vitamins and minerals. It made me fell better!

I got to go to church Wednesday night!!

I'm going to start saying what I'm thankful for each day until Thanksgiving. I challenge you to do the same! I think we need to remember how much we are blessed even in these hard times.

Your Hands by JJ Heller

"I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still"

I am thankful for God's promises that tells us that He never lets go of us.

I hope you have a great weekend!

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.

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!