our new routine

Have you been wondering what we have been up to?  

Well... for starters, we live indoors.  Not much escaping this house... which I like, but it also gets pretty boring.  

This last weekend was great.  Robbie came to town!!  The moment he saw Tenley was priceless.  He hadn't seen this girl of his for while.  A lot has changed since he left.  Last time he was with her she had blonde pigtails, was living at the hospital, and pretty much was at her very worst the day he left.  So to see the changes in person was a tender moment.

Thanksgiving was easy going.  Just our family of four, my mom, and my sister Amy.  We did something totally foreign and ordered our dinner through Harmons.

Yep, that happened.

Note to self (and mom) - never ever do it again.

I guess it was fitting for our circumstances.  We tried our very best not to complain because on Thanksgiving complaints aren't really allowed... that would be like an oxymoron or something.  

Really what mattered was that we were together, in a warm house, enjoying each other, and the blessings we have.

Now - being home, you'd think it was this big break. Well, mostly it is, but there is also a lot to remember and keep up on.  After having home health come the first 2 nights, I was on my own.  Not completely, I definitely made phone calls to make sure I was doing everything right, but it was me... all up to me to get Tenley's meds going.

Taryn wearing the backpack with Tenley's TPN and helping Tenley walk with her cords

Here's what our schedule looks like:

6am  2pm  10pm - antibiotic flush.  This means I have to clean one of her lumens (one end out of the two lines that are part of her broviac central line going straight into her heart) with an alcohol wipe for 15 seconds, then it dries for 15 seconds.  Then I push a saline solution into it to make sure it's all clear and ready... then the antibiotic goes in very slowly.  I push 1/2 cc every 30 seconds, about 5 cc's worth.  Then I flush it once more with another saline syringe, clamp it off, and we are good.

At night starting around 7, I start getting her TPN and lipids ready.  These are bags of liquid nutrition that run 12 straight hours.  The TPN I usually pull out of the fridge around 5 so it isn't so cold.  Prepping all of this takes a lot of concentration... for me at least.  I have to add vials of vitamins to the main bag, using a syringe with a big needle.  After adding that, I get the lines ready and have to prime them with the liquid running through them.  This means I get two machines to hook the lines into, then go through the program on the machines making sure they are set right and after priming them I have to clean Tenley's lumen and hook it all up.  I'd say only half of the time I get it completely right the first time.  Usually there is some sorta kink, air bubble, or just something not working right...

(see I am seriously concentrating, and Amy has become my assistant... oh and Tenley fell sound asleep this night while I was getting her all hooked up.  Normally that doesn't happen)


THANKFULLY Tenley started eating enough that we were able to stop doing this 2 nights ago!  

WHOOOOOOOOT WHOOOOOOOOOOOOOOT!!!!!!!!

So now I don't have to worry about cords, beeping machines, and wondering if I am doing it all right!  

But oh how I miss our old bedtime routine.
Bedtime... oh man, bedtime used to be so easy for us.  We did baths, jammies, and once 7:30 rolled around, all it took to get Tenley to sleep was a warm bottle of milk and some rocking.

That was it.

Nigh Night.

Now, we have no routine whatsoever.  None.  Nada.

It is survival mode with sleep here.  There is no certain bedtime.  10:00pm, 1:00am, 12:45am, 9:00pm.  It doesn't seem to matter.

Some nights I'm rocking Tenley for what seems like 2 hours.  Others she has ended up in a twin bed with me.  Last night was a dream come true.... Since she isn't hooked up to the machines, I don't worry so much to just let her have a little fit and cry it out.  I got her in bed before 11 and after rocking her and giving her a bottle (yes, she is liking them again!) I put her in the crib and after only 10 minutes she was asleep.  Then I heard her cry for a minute around 4 am.  Next thing I knew it was 8:45.  Taryn and I slept together in my mom's bed.  I was the first one up.  The FIRST ONE!  Yes, I did push the dismiss button on the 6 am alarm for her antibiotic, but a few hours late wasn't going to be the end of us!  We needed sleeeeeep!

I feel like we are finally starting to get back on somewhat of a schedule.  Maybe.  At least until we start this next round and go through it all over again.  Tomorrow we have labs drawn and will find out what her counts are.  If her ANC (the main overall white blood count) is up to 500 we will go in Friday morning for a Bone Marrow aspiration, as well as a Lumbar Puncture.  This will help them to see how well the chemo worked.  The goal is to see her in "remission."  Then the next few rounds of chemo will be to keep it all away for good.

I am crazy insanely over the top worried about the results these tests will bring.  I sooooo badly want them to bring good news.  I want that dang cancer to be dead!  Killed off!  I know all of your prayers make the world of difference...
So I am asking you to each say a prayer that we will have good news.  That this process is working and the cancer is being killed off.  I know having faith is key.  I need all of yours.

My batteries have slowly been recharged being at home.  I'm still not sure when we will be admitted to start phase 2, but I know it will be soon.  Prayers are what keep us going...

So when you begin your bedtime routine and say your prayers,  please keep my Tenley a part of them.