The Honeymoon is over.

Sunday morning dawned bright and early, with the typical Christmas hangover. The boys all had too much stuff and attention spans too short to play with any of it.  So while they haggled with each other about whose stuff was better, I walked over to the hospital to listen to morning rounds.

Capt Snuggles apparently has more tricks up his diaper.

He seemed to be doing well. He’d had a quiet night, the Chaperones were quite pleased with him. Then I saw it. The telltale signs of blood in his diaper. I opened his diaper and it was just full of bright red bloody poop. The Chaperone informed me that he hadn’t pooped in 24 hours and his NG tube was putting out a lot more stomach juice than usual.

Christmas is over and so is the honeymoon.

That earned him a CT scan to rule out any blockages in his intestines. He has GVHD in his intestines. It causes them to become thick and swollen and difficult for things to pass. Since he’s gone from pooping almost every hour of the day to just once in 24 hours and bloody on top of it – there’s much cause for concern.

We end up waiting most of the day for the scan  – Sunday afternoon turned out to be a busy time in the ER – several  trauma’s came in, putting us at the bottom of the list. During the wait, he has another, not quite as bloody stool and his NG output is still copious.

By evening, we have results – everything looks pretty much the same as the previous scan. No obstructions (good). No air in the intestines (not so good). They are thick and fluid filled.  It’s good news that there is no obstruction, but we still don’t know what’s causing the bloody stool and the increased NG output.

He is a riddle, wrapped in a mystery, inside an enigma. Thanks, Winston Churchill. Perhaps there is a key, we just can’t seem to find it.

Monday went quietly, no more poop, bloody or otherwise.  They have managed to go down some on his pain meds/sedation.  They’ve also gone down on his ventilator settings, in preparation of extubation sometime next week. His lungs are still pretty weak. Weak from being on the ventilator and having excessive fluid in his lungs, not from any issues inherent in his lungs.

And his skin continues to look absolutely amazing. Every day people stop by and gush about how awesome he’s looking. It’s good, it is. But now the real work begins, to get his insides working as well as his skin looks.

It’s going to be a long, long road.

Whew. And I’m already tired. I think exhaustion has finally caught up with me. Monday morning, I was so tired, I went back to the RMHC and slept. And slept. And then slept a little bit more.

Tuesday morning I woke up and I swear I could have went back to sleep for another few hours. But morning rounds were waiting for me.

I went back over to the hospital. He still hadn’t pooped and his NG output was still significant. His skin continues to be awesome.

He didn’t have another poop until about 3pm Tuesday and it was a repeat of Sunday mornings, bloody. Overnight into Wednesday morning, he had a total of 4 more bloody stools and his NG output is higher than it’s ever been.

On top of ALL of this, his lymphocytes are increasing. While they are not super high, they are elevated enough to determine that 50% of them are T-cells.

T-cells are not our friends.

They ordered a more in-depth blood test to determine if the T-cells are naive (his own) or activated (most likely from the graft).

So we’ll wait.

Maybe I’ll go take another nap while we’re waiting, I sure am tired.

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Categories: Life | Tags: , , , , , , , , , | 7 Comments

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7 thoughts on “The Honeymoon is over.

  1. I am amazed at your strength. It’s hard to tell whether things are really improving but there seems to be a lot of light there for you all. Fingers crossed for Capt Snuggles and here’s hoping you get some rest too x

  2. Here’s to hoping everything is going to be OK for 2011; I couldn’t even imagine.

    x

  3. Sairah

    Sigh…I hope you get some good rest. Stay strong friend! Thinking of you and David! ❤

    -Sairah

  4. Tonya Fisher

    Amy,
    So glad to hear his skin looks good! I am relieved to know this. 🙂 There are great steps in the right direction. I know this is exhausting for you and more anxiety with the elevated T-cells and bloody stools. I hate this, but if you can- try to focus on the blessings and the beautiful skin for now. You deserve to have “happy” moments too. Keep your hope and faith up. I will stop up on Jan. 3rd after Isaiah’s surgery if it is a good time. Hugs to you and Capt. Snuggles! Rest when you can, it is good for you and to keep up your strength.
    Love, good thoughts & prayers your way,
    Tonya

  5. Stephanie Herber

    Thinking of you and David. Wishing I could could come back and see you soon. Keep up all the hard work and don’t let go of your hope! He is doing so well compaired to where he was.
    David’s favorite chaperone,
    Steph

  6. what a tough journey for you all. Sounds like he is getting great care. it is so frightening, the power of the immune system.

  7. Great about David’s skin and great that you have gotten some sleep. I hope he does better this week!

    Veronica

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