Thursday, November 10, 2011

Living the life of AML

AML: Acute Myeloid Leukemia.

That is what we are dealing with day to day.  Actually it is more like hour to hour.  The good and the bad are back and forth.

Yesterday for example... I spent the night and woke up with Tenley around 7:30.  We watched Mickey Mouse and tried eating some oatmeal, then tried applesauce.  Neither one she wanted. I could tell just by the way she was holding her mouth that she had mouth sores.  They go all the way down her throat.  One of the symptoms they told us to expect.
  BAD NEWS = 1 point

As the day progressed we heard good news.  Her ANC count was coming up, which means her white blood cells are making a comeback!  I sent everyone a text with this exciting news!  They are only at 100 (a normal count is between 1500-3000)  as soon as she gets to 500 it's bye bye hospital and vacation at Grandma's!
GOOD NEWS = 1 point

But.... don't hold your breath because good news doesn't last too long in hospital land.  The little broviac line has been giving us a hard time.  Last week it tore and had a small leak which had to be repaired immediately.  Well, that first repair didn't work, so they repaired it a second time... and guess what, that one didn't work either!  So finally at 1:30 am they had the I.V. team come along and fix it as well as place an IV in her hand (because each repair has to have 4 hours to set) and she had to get her chemo, so the hand IV was the only option.
That was last week... back to yesterday... that little line tore again.  In a new spot.  You can imagine my melt down as they had to take off the dressing that covers this line on her chest, and go through all the trouble of fixing it again.  Tenley is not a fan of lying still.  Especially for this deal.  There were two nurses plus me holding her down, while another nurse did the repair.  After getting it all taken care of, I held her tight and snuggled her while she was able to calm down and watched her favorite movie Tangled.
BAD NEWS = 1 point

Later that evening Tenley was in such a good mood playing with me.  She was walking around the room, looking out the window, coloring, and then we danced to some Christmas music.  That was her favorite.  I was feeling so relieved that she was happy, the line was fixed, and slowly her room was becoming more homey.  It even felt comforting to be in this little space we have made our own.

GOOD NEWS = 1 point

Well, like I said before... something was looming around the corner.  It was shift change for the nurses and for me too.  Brett (my brother-in-law) was coming to spend his first night on duty.  The new nurse was impossible to understand.  She was from Mexico and had the strongest accent.  As she was trying to tell me her plans for the night and what meds she'd be starting Tenley on, I felt confused and frustrated not knowing what she was saying.  All day we had been so careful with the newest repair on Tenley's line.  The only thing they pumped into it was her antibiotic.  Which was on a very slow flow.  All of the sudden this nurse was hooking a ton of things up that we were behind on, and I felt like it was all too much.  It was too many fluids making their way into this fragile line, which then goes into my even more fragile baby.
BAD NEWS = 1 point

You can guess what happened next.  Another leak.  The repair was no longer repaired.  I had left and was on my way home when this news came.  I had already thought that it wouldn't hold up, but gave that nurse the benefit of the doubt.  I don't know if it was really her fault, or just the repair itself... but I couldn't take it.  Not again.  Luckily Brett was up for the challenge to be Tenley's knight in shinning armor.  I debated going back up, but decided sleep was in need, and so was the attention of my four year old.  I was so angry with the nurses, for not fixing it right... for not being careful enough.  I called the charge nurse and told him my frustrations.  He said I.V. team would be fixing it as well as placing yet again another IV into her little hand.  He also said they would make sure to keep Tenley comfortable and give her medicine to keep her calm, but not totally sedated.  Wish I could be sedated!

BAD NEWS = 1 point  GOOD NEWS = 1 point for Brett :) 

Thankfully the I.V. team got it right and made it known that they should be called first everytime to fix these things.  OK - lesson learned.... I.V. team rules...  I picture them like this coming in....
they take their job seriously. 

So, today was uneventful.  Which is what I like.  We like boring.  Tenley was restful, cuddly, and of course cute as a button.  Her line is working, and for now the good news is outweighing the bad.  

GOOD NEWS = 1 point + 1 more for this video....




GRAND TOTAL
GOOD = 5
BAD = 4

9 comments:

Kaymee said...

Oh.My. Gooodness. She is darling!!!! Christmas music always boosts my spirits too :)

Alexis Kaufusi said...

Hope she's doing good! She's such a little fighter :) i got bad mouth sores during chemo too they're they worst. they have this liquid lidocaine that works miracles. maybe they can give it to her. you guys are in our prayers!! love the kaufusi family

Malia said...

Shawna. You inspire me.
Wanting to help were we can.
I know you have loads of family...
Let me know if Taryn need some friends to play with for a day or two. I know she doesn't know us super well...
Serious.
Whatever you need.
Lovs.

Jen and Jared said...

What a sweetheart! It's amazing how kids can still find joy no matter what is going on. And yea for the good news outweighing the bad! We'll keep our prayers going that it dominates the bad 5 to nothing next week:)

ericksonslc said...

you are both perfect! i love you so much! way to find blessings in hard things!

Anonymous said...

The day a baby comes into this world is like the heavens opening up and allowing us to catch a moment of peace and goodness. When a baby gets sick the heavens re-open and allow angels to preform miracles and once again blesses us with that peace and goodness. May they continue to stay open and give you that comfort your entire family so deserves. Bless those beautiful girls you have! prayers to your family and may the blessings keep flowing!!!

Sadie said...

Oh I hope her line holds up and you don't have any more issues with it! Also, I know exactly what nurse you are talking about....i ended up putting her on my "Do Not" list. Little Tenley is adorable and I'm so happy to hear her counts are coming up....that means her mouth sores will be gone soon!!! Almost one round down!!!!

Piano Mom said...

UGH! I hate the Broviac. It seriously gave me the most headaches during Erin's treatment. The IV team does rock! They totally know what they are doing. I'm totally impressed that you called the head nurse too. You are doing a great job with Tenley's care.

I think I spent most of my time worrying about that stupid Broviac. Every moment I'd be checking Erin's shirt and making sure her line was okay. I was so obsessed with it breaking. 3 of the times it broke was when she was being watched by a relative and that was so difficult for me, but we aren't perfect and I had to just let it all go.

I think about your family often and I know you'll push through these 4 rounds so quickly you'll be amazed that you're through.

Heather and Dave said...

She is such a doll and is so strong! Wish I had rhythm like your little tiny dancer ;) How nice that the positives are ahead of the negatives now...it just goes to show how positive you are and how strong sweet Tenley is. You Re doing a great job with your girls. They are lucky to have you as their mama and protector!