5.3 million. And I don’t mean the Mega-Millions

Can you imagine 5.3 million, well, anything? I can’t. It’s a number that doesn’t compute for me. So when the doctors come in and tell me that David’s count for his adenovirus is just that, 5.3 million. It’s like a kick in the gut. How can there be 5.3 million of anything in my almost 8 month old son? It’s a staggering number.

And I’ll be honest – it scares the crap out of me.

Consider this: his adenovirus counts were in the 1,500 – 2,000 range when his GVHD announced itself back in late-September. That made him sick for a solid 6 weeks. Then he got better and the adenovirus counts came down. They were consistently less than 625 for several weeks. During most of December, the adeno counts were relatively low. But the T-cells from hell wouldn’t go away and the campath was administered. Since then, the adenovirus has crept up slowly.

Until this past weekend, when we started seeing the counts go up by leaps and bounds. 5,000 turned to 300,000, turned to 1.5 million, turned to 5.3 million. All within 4 days – that’s been his running counts since Sunday.

This number is just beyond my comprehension. It explains the worsening of his lungs, it explains the fevers and the elevated heart-rates. It explains the drops in hemoglobin and platelets. It explains why after fighting the GVHD for the past 5 weeks and getting better – really and truly getting better, he’s back on the edge of a mighty big black hole.

A black hole, I’m scared he’s not strong enough to find his way out of.

He’s so weak. And in turn, it makes me feel weak. Imagine if your newborn baby weighed 20 lbs, had seven teeth and wore size 4 diapers. That describes David. An almost eight month old newborn babe. All arms and legs and wobbly head. A newborn babe that can’t be held or comforted, snuggled or consoled.

It’s been almost 8 weeks since he was up and out of bed, almost 8 weeks since the last time me or anyone else was able to hold him.

I can’t even begin to imagine what the lack of touch has done to him. It’s not that I don’t touch him – I do. I try, anyway. But for all those weeks that he didn’t have any skin – I couldn’t hold him or touch him in a comforting way. It gives you a whole new perceptive on the term sensory deprivation. He hasn’t looked at me in weeks. I talk to him and sometimes his eyes will flutter open, but he is unfocused and no longer tracks my voice.

*sigh*

So much, every day. Day after day. I know, I know….

Every Damn Day, Just Do IT!

It’s an excellent mantra and one I am still focused on. But.

Some days it’s just hard, so overwhelmingly hard. Damn IT!

Treatment for adenovirus is the exact opposite of treatment for the GVHD. So as soon as they lower his immunosuppression to allow his body to fight the virus – the GVHD is at risk of flaring up again. And while I say risk, you know I really mean it’s more than likely going to happen.

Because the kicker is (well, ONE of the kickers) – shortly after snapping his beauty shot yesterday, a subtle, red bumpy rash started up over his head and face. Today it’s traveled down his chest and across his belly. I started to type that the rash was faint, but after further inspection – it’s not so faint. He’s definitely developed a new rash.

AND, this is the REAL kicker – that 5.3 million I’m struggling to comprehend?

It just came back over 15 million.

*crashing……..darkness…….spinning out of control……*

Around and around and around we go. Will it stop? I don’t know.

All I can say is…..

Every Damn Day, Capt Snuggles Just Does IT.

And if he can do it, so can I.

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Categories: Life | Tags: , , , , , , , , , , | 15 Comments

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15 thoughts on “5.3 million. And I don’t mean the Mega-Millions

  1. Oh Amy. I don’t even have the words. I think of you and Capt Snuggles and your family daily. I pray. I’ll continue. I wish I was closer so I could be there in some meaningful way.

    Your voice comforts him in the same way your touch did in the past and will again. Some things I just know to be true!

    Amy

  2. Stacy

    I don’t have the words, but just know you and David are in my thoughts and prayers. I wish there was something I could do or say.

    ~hugs~

    Stacy

  3. I am so, so sorry, I wish there was something I could do for you. I think of you all the time and will continue to hope for good news very very soon.

  4. Sairah

    Oh Amy! Be strong friend!! Wish I was there to give you a big hug! I am thinking and praying for you…sending you all positive thoughts and mommy strength I can!!

    (((HUGS))),
    Sairah

  5. mooney=mc2

    Ugh.

    I don’t know what else to say.

    We will continue to pray.

    mindy

  6. new follower via the hop – just flabbergasted by what I read. It has me in tears. I pray you all have the strength needed to help your son get better. I can not begin to imagine what you are all suffering through. My heart goes out to you and you are now in my prayers!

    I believe your voice and presence are a comfort to him even in the absence of touch. He knows you are there. What phenomenal strength in such a tiny body! May his might and his will overpower the adenovirus.

    Hugs to you all,
    Bernadette
    Mom to 2 Posh Lil Divas
    http://momto2poshlildivas.blogspot.com
    Twitter @bern425

  7. Luann

    There are no words to express my sadness. I can’t begin to comprehend the despair you must be feeling. Hang in there, and know that you are loved, thought of, and prayed for.

  8. Sorry, i can’t be unique – I don’t know what to say. i mean you may have to post in the am and then one in the pm, so your supporters/followers can pray and support your growing needs. I have so many questions, but it would be rude to ask at this point – i just want to be in your support base – looks like you are going to need all of us and for a long fight. I am in and going to pray – if it is ok with you, could I put Capt. Snuggles on a few of my prayer chains? My kids attend a small Christian school (they would pray in every class, parent wide prayer meeting on Tuesday mornings, mealtime, staff meeting and teacher prayer circle every morning). I have a few friends that we share prayer requests for serious needs, such as this. Keep us posted as you are able. Many prayers and blessings, Diane

  9. Many prayers from me to your sweet baby boy, to you and to your family.

  10. Kammy

    As another mom of a Citrullinemia liver transplant kiddo, I just want you to know I am praying for Captain Snuggles. These kids are so strong. His picture just breaks my heart, but also shows how tough he is. May he have a good night and turn a corner tomorrow. May God wrap him in his arms and protect him. Sending all our positive thoughts, prayers and love.

    Kammy

  11. My sweet Amy. I love you honey. I’m so sorry. I’m hear if you want to talk and you know I’m praying.

  12. Abbie

    I have only just stumbled across your blog but I felt compelled to post and say that you and your beautiful boy are in my thoughts and prayers.

  13. Nana

    Sending all the positive energy and thoughts your way I can find. You ARE your son’s blessing,even if he can’t say it…you are.

  14. Stephanie Herber

    Amy,

    Tears are flowing right now. I can’t believe it. I wish I was there to do……something, anything. I admire your courage. Not every parent/ person can keep there focus and drive through all that you have been through. Keep your head up and try to stay positive, he has already made it through so much. We know he is a fighter. I am thinking and praying for you both daily. Please tell him I said hi and give him love from me.

    Steph

  15. Pingback: A Call to Arms | transplanted thoughts

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