8.09.2012

The valley

"Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain."
-Richard Nixon

Well, I think hope we are in the valley!  Becca is feeling miserable right now.  The mucositis combined with her cold have produced an abundance of powerful coughing and vomiting in the last few days.  I explained earlier that the blood vessels in her eyes broke, causing the whites of her eyes to be blood red.  Now, she has a really swollen face/head/neck, two dark purple eyes, and some newly broken capillaries on her cheeks.  Her eyelids are so puffy that it's difficult to tell when her eyes are open.  They are merely slits, and she's having trouble seeing as a result, which makes it challenging to watch movies (the only thing she wants to do right now). As her mom, it is extremely heart wrenching to see Becca in so much pain and looking so broken.  It's a good thing that she doesn't realize how she looks, because she wouldn't be able to handle it.

We had a pretty big scare today.  Of course we were last on rounds, which didn't happen until after 1pm, and the docs were concerned about Becca's bilirubin level.  It was elevated yesterday and was even higher today.  Dr. Mehta said that they are concerned that she might be developing VOD (Veno-Occlusive Disease) and they wanted to do an ultrasound to check her liver.  When Becca was 2 1/2 years old, she ended up with VOD as a result of one of the types of chemo she was given.  Here's the post regarding that http://beccakniskern.blogspot.com/2009/04/new-disease.html so that I don't need to repeat the information.  Needless to say, Ethan and I spent the day petrified that she has again developed VOD, and that this time it would be much more serious.

After a three-hour-long ultrasound in radiology with Becca screaming, the good news is that she doesn't have VOD!  This brings much relief to us.  Now they still need to figure out how to get more fluid off of her; the Lasix isn't working.  Since we were admitted on July 13, she has gained almost eleven pounds.  That's a TON when you're just over 3 1/2 feet tall and you've put on about 20% of your weight. Becca is extremely uncomfortable, but the way to get the fluid off of her is to force her to urinate more.  They are planning to double her dose of Lasix, and she'll get it a half hour after Diuril.  Unfortunately, this entails her getting out of bed, where she just wants to sleep off the pain, so that she can go to the bathroom constantly.

In addition, Becca has become febrile, so the doctors are adding on another antibiotic.  The fevers give her chills, make her skin extremely sensitive, and cause her to be quite mean.  It's not her fault, and I try not to take it personally, but I'm the type of person who internalizes conflict.  My stomach has been in knots all day today.

The pain medication that Becca has been receiving through her PCA pump is not really doing that much to help control her pain right now.  "The pain whisperer" (Ethan's nickname for the main "pain team" doctor) told us that oftentimes kids at this point become immune to particular pain medications, and they need to switch them to a new one.  Today they will start giving her Dilaudid instead of Fentanyl.  Let's hope this works, because she tells me that it doesn't help when she pushes the button on her pump.

Becca got platelets this morning, as they were only at 12.  Her threshold is 20, which means they try to keep them over that number.  Her afternoon labs showed that her platelets were only 5 (even after the platelets she got this morning), and her hemoglobin is low, too.  This evening, she'll be getting pre-meds of Tylenol and Benadryl, platelets, Vancomycin, red blood cells, and Lasix, in addition to all of the other meds she normally gets.  I sure hope we have a good night nurse who is adept at juggling!

I was a nervous wreck today.  Boy... this BETTER be the valley!
TK

5 comments:

Aunt Lou and Uncle Rick said...

Trisha and Ethan,

I'm sorry to hear Becca's in the valley. We are praying for her counts to come up and her fever and pain to go down.

Love you!

Louisa and Rick

Cindy Fackler said...

So sorry to hear that Becca ( and all who love her so) are suffering so significantly! We will pray for her comfort and healing. I am sure that this valley feels long and unending but there is hope and healing on the other side and that baby of yours will get there soon. Hang in there Trisha, she on her way to complete recovery!

Mrs. C. said...

Trisha,

I am constantly thinking about and praying for your family. I cannot imagine how frightening this must be for all of you.

As a mother, I know that you just want to protect your baby, and you'd do anything to make her better. Your love and concern comes through in all of your posts.

I pray for abundant blessings and healing for all of you.

Kristin Carnahan

Hillary said...

Trisha,

I am thinking of your family constantly and sending prayers and big hugs. I am hoping that signs of healing begin soon so that you can start climbing out of the valley together.

We're all out here pulling for you.

~Hillary

Timmiera said...

As Dory says... "Just keep swimming, just keep swimming!" Valley's lead to beautiful oceans.
Remember to only say (and think) what you want to for Becca. Do so loudly with conviction!
Let me know if you need anything (including more movies or dinner).
Love and Light,
Timmiera