Day +10: Steady As We Go

Updated by Alexx

April 17th Day +10

I am still feeling very weak today and very frustrated.  It’s hard to maintain hope when every day they tell me I am “better” but I feel awful.  I am so weak I need my family to lift my legs for me to change position. I can barely speak.

image

Today I woke up very swollen.  I’m puffy under my eyes, my thighs have increased in size, and my abdomen is filled with fluid; it’s called ascites.  Alexx says this is because my nutrition continues to be poor, Albumin is only 1.8 still, so the fluids are outside of my vessels-known as third spacing-instead of inside my vessels.  They increased the TPN rate and stopped the IVF.  Lasix wouldn’t be very effective in this situation.  Alexx is going to see if they can try a technique she sometimes uses at Columbia—an Albumin infusion to push fluid back into the vessels, followed by Lasix.  There’s mixed data on whether this is effective, but she has seen it work.

The tube was taken out yesterday.  I drank some water, juice, and ices but I felt my abdomen get more distended and uncomfortable so I stopped.  Today Dr Rowe told me to try again but very small amounts, about 100cc for the entire day (which is about 1/2 cup, not very much).    I worked with physical therapy in the chair and it totally knocked me out.  I fell asleep immediately afterwards.

They are discussing stopping one of the antibiotics today, Vancomycin, and continuing the Meropenem.

The only good news is my white blood cell count went up further today.  It’s 0.3 and the ANC is 280.  My kidneys and liver are good.

Dr. Rowe keeps assuring us that I am improving but the progress is just slow and not completley linear.  Things will fluctuate.

image

I’m really hoping this rings true.  I hope this ends up all being worth it in the end.

As always, all of your love and kind words mean the world to me.  Continue to keep me in your prayers.

I’ve been listening to the song “Steady As We Go” by Dave Matthews Band a lot lately.  The lyrics are very comforting and ring true to my relationship with Ricky. He barely leaves my side.

Here are the lyrics:

“I walk half way around the world,
Just to sit down by your side.
And I would do most anything girl,
To be the apple of your eye.

Troubles they may come and go,
But good times they are the gold.
And if this road gets rocky girl,
Just steady as we go.

Any place you wanna go,
Know I’ll be next to you.
If it’s treasure baby you’re looking for,
I’ll search the whole world through.

When the storm comes,
You shelter me.
And I don’t say a word,
And you know exactly what I mean.
In the darkest times,
You shine on me.
You set me free.
And keep me steady as we go.

So if your heart rings dry my love,
I will fill your cup.
And if your load gets heavy girl,
I will lift you up.

Troubles they may come and go,
But good times be the gold.
So if this road gets rocky girl,
Just steady as we go.”

Advertisements

5 thoughts on “Day +10: Steady As We Go

  1. To everyday that is an improvement, even small is a success. Your road to recovery, keep steady girl friend and we’ll be dancing soon.

    Like

  2. One day at a time dear cuz. Though u still feel awful, u r making progress. It will all be behind you in a matter of weeks, and we will celebrate your recovery. It’s all uphill from here! Love u and miss u!!!❤️❤️❤️❤️❤️

    Like

  3. Steady as you go! That’s what the song says. Just breathe for today. Remember you have a great team there and at home routing for you. Love you xx

    Like

  4. Keep up the good fight! We are all cheering for you! I was diagnosed with MS in1996 when my son was 6 and my daughter was 10. There were 3 others on my mother’s side of the family that have (had – my uncle died at age 75 from MS) MS. I am 60 years old now and starting to be SPMS, they think. I am sure it is SPMS. I am researching HSCT as it seems to be the only thing that actually has good outcomes. So fight on! We are all thinking good thoughts and sending well wishes. You are my hero!!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s