Posts Tagged With: Cincinnati Children’s Medical Center

Of mice and rabbits

I dreamed of mice and rabbits, ducks and foxes. I watched as 2 rats rolled David up in a bit of dough, ready to make a kitten-dumpling.  I suppose that’s what happens when you doze off while reading Peter Rabbit and Friends.  Before dozing off, David’s blood pressures had just started rising and his heart-rate had just started falling. Not a good combination, especially in light of all the bleeding.

I woke from my Beatrix Potter dream to the need of an emergency CT-scan of David’s head. Brachycardia coupled with elevated blood pressures can indicate problems with the brain, so at 7:30am we were traveling down to CT. Fortunately, it didn’t show any bleeding or masses. The fluid that was noted back in November is relatively unchanged. There was noted atrophy of his brain, which is indicative of his extended illness and lengthy drug consumption.

So far they have not intervened with his blood pressures or his heart-rate. We’ll wait him out and see what the day brings. While there’s still some bleeding, it’s no where near as copious as it was yesterday.  As the day goes by quietly, the decrease in blood is a positive. A good indication that the octreotide did it’s job. If he could go 24 hours with no blood whatsoever, they could stop the octreotide and see what happens.


Yesterday was a touch and go kind of catastrophe with just one thing after another happening all day. A high adrenaline day that leaves you feeling drained. I knew he was teetering on the edge all damn day and it’s just the worse feeling in the world to stand by and do nothing. When our GI doctor comes in at the end of the day and says “All I can do is offer a hug.” All you want to do is cry.

But today was a new day, one that we’ve gotten through with very little fanfare. After his joy ride around the hospital this morning, things have settled and we’re enjoying the quiet. He’s stable and that’s all I can really hope for at this point.

So on to another night with Beatrix Potter. Mice and rabbits, ducks and foxes. Jemima Puddle-Duck is waiting for us.

Categories: Life | Tags: , , , , , , | 13 Comments

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


I get a lot of questions from all over the blogosphere and from friends and family as well. There’s one question that has been asked a lot and my friend, Diane, asked it again. So I’ll try and answer it the best I can. She wrote to me and said:

This poor baby when he gets better will need a detox. Why is that they feel all these drugs are less harmful than to remove the organ (that is the cause of the problems, right?) and use a machine to help stable him until availability of a new organ? I guess it comes down to I don’t understand why they try so hard to work with an organ that obviously isn’t going to work for David, or is that par for the course when receiving a transplant – being able to be strong enough to fight rejection? I mean his body is rejecting the transplant? right at least technically?

Okay, first – he’s not in rejection. His liver is beautiful and it works perfectly. Thank you Donor Family, it’s the best thing he’s got going for him right now. 2nd, unfortunately there’s no machine to replace or help a liver function. Lungs, yes. Hearts, yes. Kidneys, yes. Livers, no.

Having said that, his liver is, at least partially, the cause of his problems. After his transplant, David ended up with adenovirus. (How he caught it, we don’t know – he only left the hospital for a day before I brought him back sick.) In you or me – adeno is simply a cold. It can cause pneumonia and make you feel like crap, but generally it isn’t much cause for concern.

David was highly immunosuppressed when he caught it, he was on steroids and Prograf and the adenovirus had a field day with his less than spectacular immune system.  So while his body was trying to ward off the adenovirus, his liver tried to help. Just what all good livers should do.

Which, if it had really been his liver and his lymphocytes, that would have been fantastic. As it was – the lymphocytes his new liver created or already had in storage, went out, in reaction to the adenovirus, and attacked David’s immune system instead. That’s what’s called graft vs. host disease. That’s what made his skin all blistery and his gut not work and wrecked havoc on his eyes.

It’s why we’ve been throwing all these drugs at him. A new liver won’t do him any good – in fact, it could potentially add yet another set of donor cells to the frothy mix already buzzing around inside him. The drugs are trying to get the donor lymphocytes under control AND trying to get the adenovirus under control.

The treatments for these 2 diseases are the exact opposite. GVHD needs more immunosuppression (campath, steroids, prograf, etc) to get it under control and adenovirus needs a nice pretty immune system to fight it off. (cidofovir, ivIG)

I hope that helps explain things better and you understand a bit more of why they’re working so hard to balance all these drugs. The other things that come into play for him is the fact that several of these drugs are toxic to his kidney’s – that’s why his renal function is worsening. He retains fluid, which is bad for his lungs. They give him lasix to pee and then, when he pees too much, they have to give him fluids to help stabilize his heart rate and blood pressures.

It’s a balancing act through and through. I find it very difficult to say the words out loud – Capt Snuggles is not doing well. I know, I know I should be saying ‘he’ll get better’, ‘he pulled through before, he’ll do it again’, but I feel like that’s masking what’s really going on.

He’s very sick, there’s no two ways about it. It’s near midnight, they’ve turned up his vent settings. They are almost as high as he can go, on this vent. I’m truly afraid of what tomorrow holds. Will it be the other vent? The ‘life support’ vent that does all the breathing for him. Will he require it that soon? I’m devastated that’s it’s come to these thought’s so quickly.

His kidney’s aren’t working very well, either. He had been peeing well. They gave him the lasix, but it didn’t produce any more urine.  If his kidney’s shut-down, yes they can put him on dialysis. But if he ends up on the life-support vent AND the dialysis – there aren’t any more machines to support him.

They are going to give him diuril and then another dose of lasix. He needs to pee. He had started to bleed from his nose, so they went ahead with another 2 units of platelets. ( He received platelets this morning, but they didn’t help much.) And the plasma.They went ahead with the plasma, as well.


There is nothing easy about any of this. No kinder, more gentler way to describe what he’s going through. This is what it is. Right now, this very moment, he is stable. He appears comfortable. It’s all I want: his comfort through all he has left to endure.

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

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

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