Bloody Hell

It’s been a rough night. So rough, in fact – I’m still in the middle of it.

It’s almost 3am.

And he’s bleeding. He’s been bleeding for over 2 hours now. A steady volume out of his NG tube. 50, 100, 150, 200 mls of bright, fresh blood.

They gave him platelets at the beginning. He’s getting a blood transfusion now. He received 3 units of platelets Saturday, along with blood and plasma. It’s been less than 36 hours since his last transfusion.

I hold David’s hands. I rub his poor distended belly. I lay my hand on his head and talk softly to him. Shoooshing softly when he rouses, telling him it’s okay, sweet boy, it’s okay. I tell him he is loved and that the universe is waiting.

Waiting with bated breath for him to get better.

*sigh*

He’s not getting better.

I need to stay awake. David needs my comfort, as much as I need his. It breaks my heart when he opens his eyes. Beseeching me to do something. Anything to relieve his pain and confusion. How do I explain to him that I am helpless?

I am helpless to comfort him. Helpless to stop this never-ending disaster.

Tears stream down my face as I talk to him, soothe him, providing what small bit of respite I can, for myself and him. He still calms to my touch, for that I am grateful. He’s been without for so long, I feared it would upset rather than sooth.

Our goal for the day was to get David to pee. And not just pee, but to pee aggressively. He had received so much volume on Saturday, that come daily weight time, Sunday morning, he was up almost 2 full kilos (4.4 lbs). His chest x-ray was a hot-mess. Hazy and fluid over-loaded. They started him on a bumex drip to help his kidney’s along, then lasix and diuril throughout the day to squeeze out more.

And he was peeing, so much he actually soaked a diaper – he’s got a foley catheter in place, so that’s a lot of pee! This morning he was down 1.1 kilos (2.3 lbs). Which is good, but given the amount of blood he’s losing and the fact his x-ray isn’t any better, they will continue with the diuresis.

I slept from about 4am – 6:30am. I woke to the Nurse speaking in hushed tones to the Resident about the non-stop flow of blood. By 7am his total output was well over 350 mls, which is equivalent to a can of soda. From the tummy of an 8 month old babe – that’s a lot of blood. His usual transfusion amount is roughly half that.

It’s going to be a long day.

They will now give him ‘cryo’, a blood product made from pooled donor plasma. It contains fibrinogen, which is found in plasma and helps facilitate the clotting process. His fibrinogen level has been drifitng down and with the significant amount of bleeding he’s having, it’s an attempt to get things under control.

As if things will ever be under control again.

They lab screwed up yesterday and didn’t report the adeno count. It was frustrating to not know. Was it down? Was it elevated? Was there anything to be hopeful about? They’ve already drawn blood for today’s count, so yesterday’s is irrelevant.

Yesterday is irrelevant.

It’s almost 3pm. A full 24 hours after I started writing this. He’s stable for the time being. Although he now has bloody stools, in addition to the bloody NG output. His diuretic dose is pretty well maxed out and he still hasn’t pee’d out enough from the weekend over-load to help his lung status much.In fact, if he should need more blood products tonite, it could push his ventilator status over the top.

Today’s adeno count is back at 1.7 million. Yes, it’s down. I should be shouting from the rooftops. But even this shred of hope is difficult to grasp on to and hold close in the face of everything else.

In the face of this black hole he’s sinking deeper and deeper in.

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Categories: Life | Tags: , , , , , , , | 18 Comments

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18 thoughts on “Bloody Hell

  1. Again, I have no words – but my thoughts are with you.

  2. dysfunctionalsupermom

    My heart hurts so much for you guys. I wish I could be there with you. Just to hold your hand.

  3. Amy…i can’t even imagine what you and your family are going through. i am heart broken for you. my thoughts & prayers are with you & David as always!!

  4. Amy, it must be so difficult for you to keep the faith at a time like this. I cannot imagine what this is like for you. I will continue to do what I can to keep the faith on your behalf, to send out positive thoughts and prayers for a miracle, to get the cosmos to bend to our will.

    You are amazing. There is no other word for it. No matter what David’s outcome is, he couldn’t have asked for a better Mom to be by his side.

    Still praying for a miracle, and sending you vibes of love and strength…
    Kirsten

  5. Thoughts for you and David & comfort for you both.

    Amy

  6. Sairah

    I’m sorry Amy…oh, God…(deep breath)…still praying.. I believe in miracles, I feel I have witnessed them, and will not give up hope! (((HUGE HUG)))

    -Sairah

  7. Luann

    bleh. I’m mad. it’s not supposed to be this way. bloody hell is right.
    [sigh]
    have you made any decisions about the DNR? I can’t imagine what that is like. i had to make one for my mom, but she was old(er) and had stage 4-cancer. it’s the natural order of things for parents to die before their children. not the other way around. even then it was hard.
    i continue to pray for you, as do a great group of pray-ers at my church.
    hang in there. xoxo

  8. Kerry

    Sending lots of love and good positive strength.

  9. Ugh. Your description of watching the blood come out reminded me so much of the night L bled and bled and bled (and ultimately needed emergency surgery). I remember doing the same thing – trying to soothe her and her looking at me with such panic, confusion. It is so incredibly painful to see our kids in any type of discomfort. I hope that the blood slows down and that David can recover soon! I am holding out hope and praying for you guys.

  10. My prayers are with you…sending you big hugs from England.

  11. Thanks to Kirsten I have read your blog today, I wrote about you as well and hope to bring more prayers and best wishes in your direction. I wish for a miracle and for more strength for you and David and I am sending virtual hugs!

    Michelle

  12. Amie Ernst

    I’m so sorry to hear the pain and agony for both of you. Praying that he will stabilize and give the doctors the wisdom to know how to treat his little body.

    -Amie

  13. I’ve run out of words, Amy, but not wishes. So, I’m going to keep wishing for you guys and plagiarize Kirsten’s words:

    “He couldn’t have asked for a better Mom to be by his side.”

    I’ll keep hoping. Stay strong.

    Veronica

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  15. Kammy

    I am praying and sending all positive thoughts and love for your sweet little boy. It is amazing that his virus levels keep declining. He is still fighting and gaining ground in that area, so praying that the rest of his body can catch up and turn the corner. Keep talking to him and tell him how many people love and care for him. Sending you strength and prayers.

  16. Jennifer Miller

    Praying for strength and healing for your son. Every breath that he takes and every second of his life is ordained by a heavenly Father God that loves you both dearly.

  17. Pingback: He Lives To Fight Another Day… « Running for Autism

  18. I’m praying that your son will recover. I’m praying for you to be strong.

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