Tiny Shreds of Hope

I slept. David slept. It was a peaceful night.

*thank you*

The propofol holiday seems to have helped re-settle him a bit. They were able to cut down on 2 of his continuous pain meds and stop one altogether. When they stopped the propofol this morning, they restarted all of his continuous pain meds, just at a lower, more reasonable dose.

Yesterday he was receiving PRN doses of those 6 pain meds at least every half hour (sometimes closer to 15 minutes). Now he gets 2 each time and he’s going anywhere between a half hour to an hour.  This morning he slept peacefully for 2 full hours before he needed any PRN’s. So his appetite for PRN’s has somewhat diminished AND they seem to be more effective at calming him down.

*thank you*

Capt Snuggles temp this morning was a snuggly 99 degrees. Woo Hoo!! We were able to turn down the blast furnace that has become his room, tear off all those layers of  blankets and turn off his personal space heater. At least for a little while.

*thank you*

They think his hypothermia is a combination of 2 things.

1) The fact that the insulating layer of skin has been sloughed away.

2) The sheets of burn-gel they use for his dressings.

The stuff comes in 10×6 inch sheets. It feels like snot and is difficult to work with. They use this as a cushioning layer between him and the gauze wrapped around him. It’s used in burn patients because of the cooling effect it has. The Shriner’s docs just neglected to mention this cooling effect to our doctors.

His temp dipped down to 92 degrees during his dressing change, but is now holding at 96 degrees.

*thank you*

Now, on to the lymphocytes. Of course, the first thing I did upon waking was to check his labs. I can view all of his labs online through the hospital’s patient care site. They weren’t there. Somehow the 4am blood-draw didn’t get ordered correctly and they didn’t have the lymphocyte totals at rounds.

So we had to wait. 2 hours. It seemed like a forever wait since it was really the only lab I wanted, needed, absolutely had to know the value of.

So imagine my disappointment, frustration, mortification when I learned his lymphocytes were reported as 12 percent.

but they were zero yesterday….

How could they have jumped like that? UGH! I just wanted to scream, curse at the universe, rail against this unfairness. I felt deflated, defeated and betrayed.

The oncology doctor arrived in short order, lab slip in hand, demanding another vial of blood. She walked it down herself to the oncology lab. He is priority, he takes precedence over that pesky queue of lab orders, he ranks supreme in their quest for answers.

The labs’ job is to determine what part of that 12 percent is T-cells, B-cells or NK cells. NK cells are not a problem. Those pesky T-cells are and to a lesser degree the B-cells.  If the T-cell count was in the majority, they would know the campath is not working. So we wait.

Another 2 hours.

Which, in the big scheme of things, isn’t very long. Especially when they are doing specialty lab work that should normally take a number of days to complete.

I do not like this distinguished honor.

During this excruciatingly long wait, we managed to re-dress the babe, yet again. I say “we”, because I am an active participant. I am the only constant from day-to-day. I end up showing the nurses who are new to the re-dressing party, how to do it. If I could get a nursing license based on experience alone, I’d be in like Flynn.

If you can look carefully past the remains of blisters and dead skin. If you ignore the weeping and oozing areas of exposed skin. If you really, really strain your eyes. You can see the speckles of white, the tiny pinpoints of new skin emerging.

You can see that his skin is starting to heal.

*thank you*

By the time we are finished and have him bundled as before, the oncology doctor comes back. And she doesn’t have that strained “I have to report heart-breaking news to this mama.” kind of look. She looks, well optimistic.

The good news is the lymphocytes are mostly NK cells.  NK cells are irrelevant.


The not so good news is that there is evidence that those fugly little T-cells are making a come back.

Just like that damn Energizer bunny.

So, he received another dose of the campath. Campath does not kill NK cells, so now they won’t be able to rely on his lymphocytes getting back to zero. They will have to repeat today’s phenomenal breach of protocol in order to get an accurate assessment.

I’m okay with that.

Each day I gather these tiny shreds of hope. I dust them off and tuck them carefully away. I don’t want to lose them, not a single one. I treasure each and every one of them.

*thank you*

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , , | 9 Comments

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9 thoughts on “Tiny Shreds of Hope

  1. What a brave darling li’l boy…blog hopping…


  2. White knuckled, strangle hold on the hope.

    Sending hugs to you both.

  3. Mostly good news and I am thinking of you and hoping it continues:) Jen

  4. So glad you are holding onto hope, I’m holding on to lots of it for you too.

  5. Tonya Fisher

    I continually pray and share in your hope. May God bless your sweet little one! He is so precious!

  6. Sairah

    Still thinking and praying for you guys!!


  7. You offer such a lesson in Grateful. Small things, all the time. Thank you.

  8. I have been reading through your blog for the past 45 minutes. You are an amazing mom. You are such an awesome advocate for your little guys. I was crying reading through some of your posts. You have amazing strength. I will be praying for you and your little men, especially Capt. Snuggles. It isn’t always easy to figure out why God does what he does, that is a tough question…why? God has blessed you with these boys and this disease for a reason. I am not trying to get all preachy on you, that is not my agenda. But He has a plan for you and your boys, I don’t know what it is but I will be praying for answers and guidance for you. I hope this road gets easier and much love.

  9. Big hugs and lots of love to you both.

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