#52 - now you see me - now you don't

Date Sent: Fri, Oct 30, 2009 at 3:58 AM

I can fall asleep at the drop of a hat - anywhere - anytime. This is a very useful trick I learned from my mother. I have never had sleep problems. But I've been lying in bed for the past 40 minutes wide awake, ready to tackle the day. It's 3 am - this is nuts! I finally decided to get up and type this email. Hopefully once I'm finished sleep will become my friend once again.

On Wednesday a week ago, someone who gets these emails (and found me on Facebook) posted the following verse on Facebook: "Be strong and courageous; do not be terrified or afraid. For it is the Lord your God who goes with you, He will not leave you or forsake you." (Deuteronomy 31:6). Well, I read that - it spoke to me - and I started speaking to God! "Oh no! Not now! We're moving in ONE WEEK - I don't need to go through an ordeal where I need to be reminded ahead of time that you're not going to leave me. This is bad timing!" But I felt incredibly pressured, so I changed part of my "moving battle plan" and worked on different things that were on the list - things that I needed to be the person to do. And sure enough - two days later I was on my way to the hospital for what ended up being four days. (So, I'm not sure why you posted that as your status update - but God used it to prepare me for what was about to happen, and to get my rear in gear in terms of getting ready to move. So, thank you!)

I last sent an update one week ago today (Friday). Aaron and I were driving to Pittsburgh for me to be admitted because I understood that I had septicemia again. I had sent out an email begging for prayers for our family. Apparently THEY WORKED! The blood cultures that were taken in Hershey showed that there was a REAL bacteria (not just a contaminate) in the blood in my hickman catheter. I think the doctors said it was gram negative staff (whatever that means). Well, when we got to the ER in Pittsburgh, two more complete sets (8 bottles) of blood cultures were taken right away. An hour or so later the docs finally decided which antibiotic to start me on, and I was admitted and sent to a real room. I ended up being admitted for four days, and ALL blood cultures that were taken in Pittsburgh were NEGATIVE! Real bacteria don't just disappear!! And I wasn't started on antibiotics until AFTER the blood cultures were taken. The docs were so confused that they did repeat cultures to make sure a couple days after I was admitted! ALL BLOOD CULTURES THAT WERE TAKEN IN PITTSBURGH WERE NEGATIVE. There's the power of prayer for ya!

So, if all the Pittsburgh blood work said I wasn't sick, then why was I stuck at the hospital for four days? Excellent question! I asked every doctor I saw that very question! The bacteria found in Hershey was a real one, and the doctors couldn't agree what to do. I looked healthy - I felt healthy (by the time I arrived in Pittsburgh though definitely not when I was at home) - but if there really was bacteria hiding somewhere in my hickman and they sent me home, I could have gotten deathly ill. So, the doctors had a rough time agreeing what to do. (And I felt like a child who was grounded for something she didn't do.)

Finally what was decided was that the possibly (?) infected hickman catheter would come out. That way if there was bacteria hiding in it, they'd be removed and problem solved. But I need the hickman to get my constant iv, so they needed to decide how to administer my drug instead. So, a PICC line was put in my arm. It's like a semi-permanent iv that goes in my right upper arm. The inside part also goes straight to my heart just like the hickman did. For some reason, the type of medicine I get can't go in just any vein, it has to go straight to my heart. But this solution posed some problems of it's own. If my hickman was really infected, and a PICC is replacing it, and those nasty bacteria were also at the end point (in my heart), then when the PICC goes in, it'd immediately be infected. Decisions - decisions. Technically since this new method can also get infected, it was decided by the powers-that-be that it could only be a temporary solution.

So, on Wednesday, November 11 I'm being readmitted for several days. I will start getting my medicine sub-cutaneously in my stomach area (kinda like an insulin pump). A little iv tube will be inserted into the fatty layer (which I have plenty of!) and my body will absorb the medicine. Since no iv tubes will be going in my veins anymore - no chance of blood infections anymore. Problem solved! There's just one catch. There's a 50-50 chance of me having excruciating site pain. I've met two ladies who get Remodulin this way (from my Hershey support group). One of them has the pain, and the other doesn't - just like the research shows - 50-50 chance. I'm praying that I fall into the "no pain" category!

So, once all of this was decided and worked out I was finally released late Tuesday afternoon (just in time for rush-hour traffic), and my mother (who had driven out earlier that day) drove me home to Mechanicsburg. Twenty-three hours after arriving home from my four day hospital stay the moving truck arrived. And praise God (thanks to my burning desire to be productive the weeks before hospital and lots of help from friends) we were completely ready for the truck! So, the truck was completely packed in 4.5 hours on Wednesday (thanks to 11 sweaty guys). On Thursday we finished up a few errands and by noon were on the road driving to Pittsburgh. Tonight we're staying in a hotel (which is free thanks to Aaron traveling for work so much recently). And at 9 am this morning (Friday) we're buying our new house! Originally the doctors wanted me readmitted on MONDAY to switch to the sub-q - - I just laughed at them. So, finally we agreed to give me a week and a half to at least find the toothpaste, etc. at the new house.

So - thanks for ALL the prayers! THEY WORKED! The bacteria "disappeared" miraculously. I was discharged in time to move. I got a doctor's note saying I can't lift anything for two weeks (because of the new PICC and hickman that was removed). And I am being given another week and a half to "settle in" before my next hospital stay.

Well, I'm gonna send this email now. And hopefully that's why I was wide awake in the wee hours of the morning, and I can get back to sleep now.

Blessings.

~ Julia