Posts Tagged With: Health


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

2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

Every Damn Day Just Do it

Every Damn Day Just Do It

Sounds like a Nike commercial, doesn’t it? If you have found my blog or any other website ever in your life – you know how to use a search engine. You know how to ‘google’ stuff. Do you ever put random words together to see what sort of pages you arrive at?

I wonder.

Someone entered the above set of words (probably googled them) and landed on my blog. (Most blog software keeps track of search terms.)  Quite fitting actually, but raises the question – what was this person looking for?

I doubt it was the story about a little bambino languishing in a hospital bed.

I doubt it was the story about said bambino’s frustrated and exhausted mama.

Just what was this person looking for?

I’m sure I’ll never know, but the sentiment is apropo, isn’t it?

Because every damn day, we just do it. We get through each day. At the end of which, we breathe a sigh of relief that we had this day together. We  thank the universe for this time, however tenuous and we have the tenacity to ask for more.

Monday was no exception to this mantra. While it had started with the Surgeon re-suturing the breathing tube bright and early, the day overall was relatively quiet. The sutures seem to be holding, his bleeding was minimal.

He seemed comfortable most of the day. All the doctors oohed and aahed over his skin. It was uplifting to hear how impressed they were with the way his skin is healing.

Go! Baby! GO!

I cracked opened the door in my heart that keeps hope and optimism and light tucked safely away, separated from the fear and frustration and darkness. I let the hope and optimism and light buzz around me for most of the afternoon. I was content to corral the fear and frustration and darkness back into the corner, back into the dark hole it festers in.

Then the Fellow showed up at our door.

Everyday they do blood cultures on all 3 of his access sites. That’s how they knew the fat-loving fungus was growing in his central line and not anywhere else.

That’s how they now know there’s bacteria growing in  his new leg PICC.

He’s only had it for two days! How can he have an infection in it already? He’s on 4 different broad spectrum antibiotics, an anti-virual, an anti-fungal and a monthly infusion to ward off pneumonia’s.


Now I have to wonder – he hasn’t needed as much sedation for the past 2 days. Is it because he’s sick? Not feeling well?  I thought he was mellow because he needed blood on Sunday, maybe it’s something else. He threw up yesterday, does his belly hurt?  He’s been running low-grade temps for a few days now. Was that the first indication of things to come? I have to go back to my notes – no – the fevers started prior to the insertion of the leg PICC.

UGH! Some days the ‘what if’s’ drive me crazy.

An infection can be a death sentence for him. He already has Aednovirus, the bug that started all of this. He already has malassezia furfur, the fat-loving fungus in his central line. He already has VRE (vancomycin resistant enterococcus) in his poop. Now he has an unknown infection.

And no immune system.

I feel defeated. Deflated. Devastated.


Every. Damn. Day. Just. Do It.

We will get through this day.  At the end of which, I will breathe a sigh of relief that we had this day together.  I will thank the universe for this time.

And I will always have the tenacity to ask for more.

Categories: Life | Tags: , , , , , , , , , , , , , , | 11 Comments

Blood and Stitches

The one thing I did not mention in Saturday’s post is the thing that came back to haunt us today. Multiple times.

During the multiple events of Saturday, the Surgeon had to come and re-suture David’s breathing tube. If you recall, the other Surgeon had sutured it to his cheek after David had extubated himself 2 days in a row. In between then and now, the Surgical Fellow had re-sutured the breathing tube on 2 more occasions.

Just before David’s brachycardic episode on Saturday, the Surgeon had been back to do the re-suture. That was the 4th time the breathing tube has been sutured to his little denuded face.

So fast forward to 1am Sunday morning and the Fellow and the Surgical Fellow come in because the Chaperone’s are concerned for the suture – it looks loose, they are worried it may become looser and he could run the risk of being extubated, again.  Surgical Fellow feels it can wait until morning. (Rounds are at 7:30am.)  He suggests a Patient Care Attendant if we’re very concerned.

Let me clarify – he has 2 full-time nurses all night long, the RT checks on him every hour or so AND I am sleeping (if I can actually get to sleep) right next to him. The Surgical Fellow wants to add a 4th person to the mix to do what exactly? In the words of said Fellow: “You can get someone to sit in here and read their magazines and keep an eye on the tube.”

I told them flat-out – No! I understand the risks of him being extubated, but having someone sitting in the room reading magazines until morning is not the answer.  Especially someone who is not even a nurse – what would they be able to do, exactly? I say damn lazy Surgical Fellow – he could have added a couple quick sutures around the breathing tube – as an added measure – if he truly felt there was concern. I just think he didn’t want to mess with the Surgeon’s handiwork.

So they agreed to be “generous” with his sedation. We made it through just fine until….

What? It’s 4am? Really?

This time it’s not the breathing tube. Capt Snuggles is bleeding. Profusely. From the open areas on his back. We had to change the dressings and all the pads underneath him. It just soaked all the way through. This is relatively new. He has had some bleeding during the dressing changes, but this is the first ‘spontaneous’ bleed.

We get him cleaned up and re-dressed. He’s snuggled back up, I try to lay down for an hour before rounds.


Shift change (7:30am) Just as the Chaperone enters the room the ventilator starts going off – David’s moving and just as he turns his head – I catch the breathing tube. The suture has come undone and desperately needs to be replaced. If I hadn’t been standing next to him , there’s no way I could have stopped him from extubating himself. Just like someone reading a magazine wouldn’t have been able to do anything. The Chaperone held the breathing tube in place until the Surgeon came in. Since it was time for rounds, the Surgeon  wasn’t far away.

I listen to rounds while the Surgeon sews the breathing tube back in place. After the Surgeon leaves, the Chaperone calls out that he’s bleeding. Again.

The ICU Attending, the BMT Attending, the Fellows, the Surgeon and more Chaperones all race into the room. It was a little unsettling, to say the least.

Our Designated Chaperone had been changing David’s diaper when she noticed the bleeding from his back again. This time there were areas on his right and left sides. Pressure wasn’t stopping it. They had to use a special spray that helps stop bleeding. They also went through gobs of ‘quick clot’,  special gauze that helps stop bleeding. It took almost 4 hours to get the bleeding under control, re-dress him and get him cleaned up.

In the middle of this mayhem – the Surgeon had to come back – you guessed it – the damn suture came undone, again.

To say I’m frustrated almost belittles the whole situation. We have been in high gear everyday for a solid week. It’s an odd disparity – his skin is so improved, but the rest of him is suffering.

The Surgeon wants a call-back to Shriner’s for help with the breathing tube situation. The logic is there are patients with severe facial burns that require breathing tubes – how do they keep them in?

As for the bleeding?  *shrug* BMT seems to think it’s the ‘mechanics’ behind his skin healing. He needed a full unit of blood today to make up for the loss – that’s a lot of blood. He’s had approx 22 blood transfusions since we arrived here on August 18.

5 of them in the past week alone.

It’s 1am Monday morning and there’s still hustle and bustle about the suture holding the breathing tube. Surgeon gets called, yet again. I’m sure he’s not pleased with this whole fiasco.

He arrives promptly at 7am, adds to the sutures already there. He is unhappy that he has to extend the suture to David’s little cheek, but he does it.

Rounds will start shortly and our days’ activities will be back in full swing soon.

I’m hoping for a peaceful day.

I think we deserve it.

Categories: Life | Tags: , , , , , , , , , , , , , , , | 8 Comments

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