Posts Tagged With: GVHD

And so it goes

We had a good, nay, a GREAT day, yesterday.

Today, not so much.

But that’s the roller coaster of this mess. Up and down, down and up. It’s difficult to access how each day affects his overall prognosis. Especially when you have a day that seems to set you back 2.

At 4am his hemoglobin, platelets, and blood pressure were stable. At 10am, they weren’t. In the short period of 6 hours, the world turned upside down. He needs blood, he needs platelets. After several interventions (i.e. albumin boluses) his blood pressures are still low. Initially they thought his blood pressure was low because they pushed too much trying to get his kidney’s to flush out all the excess fluid. Maybe now he is too ‘dry’.

Or not.

Maybe he’s just getting sicker.

Maybe today is the day he tips over the edge of the black hole and can’t be brought back, maybe in those 6 hours the universe shifts.


It’s the emotional roller coaster that take’s it toll. Well-meaning folks ask how I’m doing. They express disbelief at my mental fortitude. They offer up suggestions, that well, I’m uncertain about. Sedatives? Anti-depressants? Sleeping-pills? *gasp* A therapist? Alright, alright, settle down – I am not opposed to any of these things. But right now, in this moment, I don’t want drugs – I don’t want to not feel what’s going on here. Someday, the time will come when I won’t want to feel anything.

I’m pretty sure at that point, a good bottle of wine will do the trick.

As for the therapist, I was not really given the option to say no to that one.  She appeared at my door a few weeks ago, sent from the team as a resource and a way, I’m sure, to confirm that I wasn’t headed to the padded room reserved for 1. We talked. She asked questions, I answered truthfully. She acknowledged that I didn’t need her. I was coping well with it all, the highs, the lows, the very lows. It is my strength, she says. The ability to be focused and in the moment and not fall to pieces. Yippy Skippy. Maybe if I didn’t have to use the skill so damn much – I wouldn’t be so damn good at it.

So here I sit, the air knocked out of me, watching David sleep. Every now and then we rouses and opens his eyes. Today more than any other in recent memory, he has spent a great deal of time with his eyes open. But his eyes are unfocused. They no longer move together as eyes should. Nor, do they track, either to my voice or to an object in front of him. In fact, the doctor stood and flicked her fingers directly at him, almost touching his eyes.

He. Never. Once. Blinked.

Now comes the realization that he may not be able to see. It may be swelling, it may be weakness, it may be permanent.

Life and death, darkness and light.


As of right now, his blood-work is stable. He appears to be comfortable. I’ll know what tomorrow brings when it comes. As for now, I’ll recite my mantra:

Every. Damn. Day. Just. Do. IT.

Categories: Life | Tags: , , , , , , , | 14 Comments

And so it begins.

First, let me just say, I am in awe. In awe of the outpouring of love and support from the blogosphere.  Consider yourselves hugged. All of you. Even you folks that just lurk and don’t comment, yes I know you’re out there. I have amazing friends, Mindy and Kirsten, and to everyone who took to FB and Twitter, thank you, thank you, thank you.

I’d like to think the crackle of energy in here over night, was just my imagination – but when the nurse commented to me how ‘different’ our room felt from the others.  I knew. I knew each and every one of you was sending us all the bright and shiny, positive energy you could muster.

Thank you Sir and May I have another?

Because Captain Snuggles is not out of the woods by any means. In fact he’s very, very far from it.  They uttered that dirty word ‘septic’ this morning in rounds and all I can ever think of  when I hear that word, is dirty, toxic sludge swirling around,  poisoning him.

ugh. It gives me the willies just thinking about it. *shivers*

His condition is tenuous. While he was relatively stable this morning, maybe a bit worse with some blood work and vitals, maybe a bit better with how his skin looks. This afternoon he’s worse. His blood pressures are running low, he’s been dropping his oxygen a bit, his kidney’s are not happy and overall he’s acting sicker today than yesterday. He’s been given blood and platelets and they’re discussing plasma. He’s getting cidofovir and IVIG and possibly adding another antibiotic, if his vitals don’t improve.

His lungs, in particular are acting up. His blood gases are pretty crappy right now. They’ve given him sodium bicarb because he’s acidotic, if that doesn’t help, they will go up on his ventilator settings.


These are the things the doctors warned me about.The beginning of all things bad.

His adeno counts just came back at 4 million, down from 5 million yesterday and 15 million the day before.

*sigh of relief*

A little bit of bright and shiny to brighten our way through of the forest.

Categories: Life | Tags: , , , , , , , , , | 14 Comments

A Call to Arms

They came for me today.

Folks I’ve known for years now. Folks who have seen me through the transplants, the illnesses, the seizures and the surgeries.  Through good blood-work and bad, these folks have always lent me an ear when I needed it. Folks I’ve had the privilege of sharing 3 of my sons with. Entrusting them in their capable hands.

They came for me today.

But it doesn’t really make the *talk* any easier, now does it? For them or for me. And yes, our Favorite Fellow had the *talk* with me at Thanksgiving, when the GVHD flared then and he couldn’t sustain his temp and his skin was all blistery and melting away. But this time, *sigh*, this time is different.

This time, it’s the folks who know us so well that have to be the bearers of bad news. The messengers that discuss DNR orders and how and when to decide when enough is enough. Can there ever truly be a time when I have to say ‘enough’?

His condition isn’t very much changed from yesterday. They tried to decrease his immunosuppression just a bit by reducing the steroid dose and stopping the Prograf. It worried me then and it worried me this morning. The last time they stopped the Prograf was Thanksgiving. I think we all remember how well that went.

So when I came in this morning, after only a couple hours of fitful sleep, and saw the rash, my heart fell. My immediate thought was please re-start the Prograf.  And they did. The steroids were increased as well. So far, no blistering, just a bumpy rash.

The biggest set back he had over night was with his ventilator settings. He has been on pressure ‘support’ since his original intubation at Thanksgiving. The adenovirus, the VRE, the excess fluid and the shear longevity of his intubation have all contributed to his lung’s inability to work effectively. So they switched him to both pressure ‘control’ and pressure ‘support’, increasing the settings as needed.

Capt Snuggles is a balancing act on so many levels. His kidney’s are weakening along with his lungs. There is a very real possibility he could end up on dialysis. If his lungs continue to weaken, a different ventilator will be brought in – one that does all the work of breathing. The one you unplug when you finally say ‘enough’.

It’s so hard to formulate thought when someone is calmly discussing at what point a DNR order should be created for your son. When someone says that you should call your family and ask them to visit, that maybe now is the time to let the boys have some time with their baby brother,  when someone says these things to you – what do you say in return? Cognitive thought leaves you and all I could think was “Who the hell am I going to call?”

My mother ran away years ago, my father is 70 and won’t want to drive down from Chicago by himself. I can’t expect my older kids to run down from Chicago, leave school and do what? Say good-bye to a baby brother they never met?

My mother-in-law wanted to come down this afternoon, but the roads are bad with snow and she was upset, I surely didn’t want another catastrophe on my hands, so I told her to wait. Sister-in-law called to say they’ve got sickness in their house – I told her to stay away, the last thing we need is another bug.

How did we ever get to this dark place?

It’s almost comical in a near hysterical way – the one bright spot late this afternoon was his adeno counts coming all the way back down to 5 million from last night’s 15 million.

Life is a fickle bitch sometimes, isn’t she?

Someone asked me if it was okay to pray for us. Absolutely, Please and Thank You, feel free to send all the love and positive energy you can muster our way. I may struggle within myself about the Powers that may or may not be. But I don’t care if you pray to Vishnu or Buddha or Allah or Yahweh or Jesus or G-d or even, Zeus himself. I want those positive thoughts.  I need those positive thoughts. I will be greedy in my quest for as much love and good, wholesome, positive energy as I can squeeze from you.

Does that sound fair? I will pour all my dark, heavy fears, hopelessness and negative energy out into the universe and you guys will send it all back, bright and new, a hundred times lighter and more positive than before.


Captain Snuggles is waiting……

Categories: Life | Tags: , , , , , , , , , | 47 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.


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

The Wordless Wednesday We’ve ALL Been Waiting For

I know, I know – it’s supposed to be a wordless Wednesday. But I have to say at least a few words. A few words to say: I really, really struggled with posting this pic. I’ve been waiting and waiting for his skin to improve to the point you wouldn’t believe all the bad things I’ve been saying about his skin.

So first, I want you to imagine a burn. A burn so bad, that it blistered and when the blister broke and the skin peeled away, it bleed and left the skin under it raw, irritated and weepy. Now imagine that it happened over 80 percent of your body. Your face, your scalp, your ears, your back, your chest, your hands, your feet. All of it, gone, even your nails have peeled away.Then imagine as it starts to heal and scab over. Slowly, ever so slowly scabbing over.

Are you sufficently mortified by that image?

Good, because this is what Capt Snuggle’s look like now.

Aren't I beautiful?

Isn’t he the most beautiful thing you’ve ever seen?

I think so.

Categories: Life | Tags: , , , , | 20 Comments

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