Posts Tagged With: I’m stressed

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

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.

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

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