Monthly Archives: November 2010

Intubation #6

At the risk of sounding like a broken record.

Yes, David extubated himself, again. Yes, they had to re-intubate, again.

This time they put the breathing tube down his nose instead of his mouth AND  the Surgeon came and sutured the tube to his cheek. I think we can be a bit more confident that it’ll stay in place. That’s what I’m hoping for, anyway.

I need to be forthright here. David is in a tough place.

A. Very. Tough. Place.

A place I didn’t expect to be in, a week and a half ago. A week and a half ago when he was out of bed and smiling at the Occupational Therapist. A place I don’t want to have to visit ever again.

The doctors are perplexed at the progression of the GVHD. Perplexed doctors are never a good thing. Especially when the doctors tending to him are sought out for their knowledge. Families from all over the country come here for the expertise of these doctors.

David is in a tough place, indeed.

It took 4 hours today, to change the dressings that cover him from head to toe. 4 hours with a doctor, an RT  and 8 nurses.  There is discussion that maybe an OR suite would be a more appropriate place for the daily re-dressing of the babe.  We’ll see what tomorrow brings.

Right now one of the Fellows is visiting us, trying his damnedest to insert an arterial line into David’s foot.   An arterial line measures his blood pressure on a constant basis. They are unable to take cuff pressures because of his skin break-down. He had an arterial line placed in his wrist when they intubated him on Friday, but it’s no longer good (i.e. he’s losing the circulation in his hand) and it needs to come out. NOW.

Between him and his Fellow predecessor, it took almost 6 hours to get the new line placed.  6 long hours.

Every day is like running a marathon, not just for David and I, but for the doctors and nurses that are caring for him.

I feel so useless most days, because there really is nothing I can do. I can’t even do once simple things, like changing his diaper. I try to pitch in and help, though: grabbing supplies, opening packages, cleaning up around the room. Whatever small things I can do to be useful.

Diaper changes have become the stuff of nightmares.  An hours’ worth of time, at least 3 nurses, and an extra dose of sedative, just for good measure.

During this evening’s spectacular poop blow-out, the Nurse Who Rubbed Me the Wrong Way asked if they had thought about using a fecal containment device.

Isn’t that the definition of a diaper?

Some Nurses do not value my opinion as much as others.

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Intubation #5

I want to blame someone, anyone.

The Chaperone for not paying enough attention, the Fellow for not giving enough sedation meds, myself for not being diligent enough.  But in the end, I know it was an accident. One minute David was intubated, the next, not so much.

At 9:30 this morning, David’s breathing tube slid right out of his airway. The nurse was on one side of him, I was on the other. He started to wiggle because he wasn’t sedate enough and then he was crying, gasping for a breathe.

After 3 hours of sleep, I was not prepared for this.

Not. Prepared. At. ALL.

Our days have become a slap-stick comedy of misfortune. A Three Stooges short gone horribly wrong. I’m willing to take a frying pan to the head if we could just get to a better place. Just a little bit better? Please??  I’m not greedy.

So, Capt Snuggles is extubated. The sedation meds have to be stopped. The decision is whether to re-intubate or leave him on the high flow nasal cannula. The decision is shadowed by his extreme pain involvement. And the fact that he needs his wounds re-dressed, which will inevitably cause him more pain.

They tried. They tried to dress his wounds without heavy sedation. If I could scratch my eyes out to eliminate the image of his pain, I would. I have no words ( at least none I want to share with you, dear reader..) for the events of today.

Suffice to say, at the end of the day, dear Capt. Snuggles is intubated. Heavily sedated and wrapped from stem to stern with thick, soft bandages.

If only life was as simple as a pie in the face.

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Disorganized Breathing

I dislike this Fellow. He’s cocky and arrogant. He does not have a rapport with the patients, or the nurses, for that matter. He walked into our room, exclaiming “Whoa!”, in that damn that boy looks bad kind of voice. Not the voice you want to hear in reference to your own child. Maybe I am overly sensitive. Maybe he just rubs me the wrong way. But he is the one I have to deal with, the one who will intubate Capt Snuggles, yet again….

I knew when I woke up, that David would be intubated before the day was done. It wasn’t that he was breathing 100 times a minute, not so much, anyway. That seems to be the norm for him these days. It was the way he was breathing, like his whole body was gasping for air.  The Fellow called it Disorganized Breathing, he was inhaling twice, exhaling once. Inhaling once, exhaling twice. It was very hard to watch him struggle, not knowing the cause of his erratic behaviour.

The whole day was rough. He needed a blood transfusion. He needed the remaining dose of campath. He needed Cidofovir (treats Adenovirus). He needed a fluid bolus before and after the Cidofovir. All this in addition to his daily regimen of  5 different IV antibiotics, steroids, Protonix (protects the stomach from ulcers), IV nutrition, pain meds and fluids. Factor in the frequent blood draws and his dance card was full, full, full. Take a number and wait your turn. It was going to be a long day.

He was in such  obvious pain from all the open blisters now covering his little body. And no matter how much pain medication they threw at him, it wasn’t enough.  Somehow we got through the day. But by evening, he had spiked a fever, his blood pressure was sky-high, his heart rate low. While his blood work indicated he was processing oxygen adequately, it was obvious by looking at him that he was struggling.

We encountered a set back with his central line, somehow the hub came loose and was leaking. It needed to be repaired. This meant for about 6 hours he was without one of his access points. IV nutrition was turned off. The line needed to fixed and quickly. The risk of infection from a hole in the line is incredibly high. An infection his body is no longer able to fight.

The decision to intubate was made around 11pm. Ready, set, GO! Such a flurry of activity~ 3 doctors, 3 nurses, 2 respiratory therapists and a slew of helpers in the hall ready to get items as needed. It’s a bit like a sci-fi movie, all the scientists gowned up – ready to dissect the alien.

The Fellow does the actual intubation, the Resident assists. The 2nd Fellow supervised. One Nurse charts, one Nurse pushes meds, the other Nurse does, well,  everything else. The RT’s keep him breathing.

Copyright @Dan Piraro 2009

Fortunately, the Fellow didn’t have any trouble with the actual intubation. It was a struggle to get the ‘tube’ taped in place, though – both of his cheeks had multiple blisters and the skin had peeled away where the existing tape had been removed.

The RT and the skin-care nurse brain-stormed and came up with a way to dress the open wounds and still fasten the breathing tube in place. All the while, the 2nd RT kept him ‘bagged’. They couldn’t hook him to the ventilator until they figured out how to secure the tube.

It’s mind-numbing to watch someone squeezing that little bag, manually blowing air into his little lungs. I wanted to scream for everyone to Shut-Up – so the RT could concentrate on what she was doing.

squeeze    release    squeeze    release    squeeze    release    squeeze    release

Now the hard part ~ getting him sedated.  If he’s not fully sedated, he runs the risk of pulling the breathing tube out.  Sedation is an on-going event. He can require adjustments to the med doses on an almost hourly basis for days to come.

After the intubation, his blood pressure dropped, requiring epinephrine to stabilize, his body temperature went down to 93.4, his heart rate was elevated. His electrolytes, his potassium in particular, were off kilter probably because the TPN had been stopped. He needed another blood transfusion, his platelets dropped to 30.

I say ‘after’ only because, time-wise it was after. Intubation would have become an emergent need if they had waited much longer to do so. Some of the reactions were related to the campath, some to the sedation meds, some to his overall diminished state.

The good in all this is that his pain is better managed. They were able to dress all of his open wounds, essentially treating him as if he were a burn patient. They inserted an arterial line to constantly monitor his blood pressure and provide another access for blood draws.

It feels like we’re back to the beginning, though. This roller coaster ride isn’t over yet.

I’ve always hated roller coasters.

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Just Another Day

I am not that strong.  Tears threaten to control me.  Some days have me down on my knees, forcing my submission. Some days make you question everything you know about yourself. Today was one of those days.

To be honest, I don’t enjoy the holidays. I’m sure, in part, it goes back to the awful family melt-downs that were my childhood. But even more than that, ever since Nathaniel, it always feels like something is missing. It doesn’t really matter if everyone is together, there is still a hole for me. I go through the motions, I buy gifts and decorate the house. It is for others to enjoy, not me. I do enjoy Christmas morning, watching the boys’ faces light up with delight. But I hold my breath until it’s over, waiting impatiently to take that damn tree down.

Thanksgiving is usually ‘my’ holiday. My dad and older kids come down for the extended weekend.  I cook. We laugh. We bicker. We connect. It’s usually one of only 3 or 4 visits a year that we get to see each other.  But, not this year. The pilgrimage will have to wait for another time.

Instead, my mother in law was roped into kindly offered to cook Thanksgiving dinner. I wanted to see the boys and was looking forward to leaving my hospital vigil, if only for a couple hours.  Last night, I suspected though,  I would not make it out of the hospital today, and I was right.

David has been having a rough week and this morning, was no exception. Quite possibly worse, in fact, than previous days.  The weather was dreary, as well. Cold and pouring down rain. I needed to stay here. I couldn’t leave. Every whimper he makes,  breaks my heart a little bit more.  The GVHD has progressed to blisters. Imagine 80% of your body with 2nd degree burns. Painful, torn skin. Blistery sores. Oozing wounds. That’s what Capt Snuggles is enduring right now. There will be no snuggles for him, not for a very long time.

My heart aches, because I can’t do anything to comfort him. How can a mother not comfort her child? I want to scoop him up and love on him. But every move tears more delicate skin, causing him pain and increasing his risk for infection.I fought back my tears most of the morning. green gorillas, green gorillas, green gorillas… I repeat it in my head to hold back the rush of tears.

Break down is not an option.

Once he finally drifted off into a fitful sleep, I  found myself wandering the empty corridors. The silent halls are somewhat eerie in the middle of the day. Was everyone at home? Weren’t there any visitors for all the other kiddos here?  I ended up at the chapel. I know, weird place for me to end up. But it was empty and quiet and I finally allowed myself to cry……

I was drawn to the guest book. Family members writing prayers for their children. So many different hands, several different languages, all so heartbreakingly the same,…please heal my child….

I could not add my name to the list, it is not logical to make such a request.  My Faith in myself is shaken, yes. I question my ability to continue on, to be what I am needed to be.  So how do I put Faith into something that can’t logically exist? And if it does exist, how do I put Faith into something that created this whole damn mess in the first place?

I do not find peace in the chapel.  I leave, quite possibly feeling worse than when I entered.  The hospital is so quiet, you’d think it was 2am, instead of 2pm.  I am not hungry but I feel obliged to eat on this day of gluttony.

I do not feast on turkey and mashed potatoes, instead I buy chicken tenders and banana pudding in the hospital cafeteria. I do not finish it, I am not comforted by food. So I head back, feeling no better for having taken an hour or so away from his bedside.

It hits me that I am exhausted. That bone-wrenching tiredness that doesn’t go away, even if I manage to sleep, I will still be exhausted. But  David is sleeping well, finally, so I head to the RMH for a respite. I fall asleep as soon as I lay down, thankful for the gloomy weather that makes naps so irresistible.

When I return from my nap, 3 hours later,  David has spiked another fever. It will be a long night, much like days past. While, I have no new perspective or enlightenment.  No solutions for my weariness.  I still have a babe that needs me.

Even if all I can do is sit here, waiting impatiently for the chance to snuggle him.

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Cytokine Madness

Okay class, listen up. Today has been a crap day. That’s right, I said crap day.

Honestly, it’s been worse than crap, but this is a family show, so I’ll leave it at CRAP.

I try very hard not to be all gloom and doom when it comes to Capt Snuggles and his various ailments. Various, mind you, as if one just wasn’t enough. But some days the doom and gloom take over and it’s all I can do not to scream.

So if you’re arriving late to the show, I’ll give you a brief run-down. The Captain had a liver transplant back in mid-August. Directly after the transplant he caught a virus called Adeno and then he developed Graph vs Host Disease. We’ve been in the PICU for 3+ months fighting both of these bad boys.

Last week he was out of bed, laughing at his Occupational Therapist.

Today, not so much. Today he was feeling yucky. Today his rash spread. Right before our eyes, like wildfire. The GVHD went from being only on his hands and feet to, well, everywhere.  Scalp, forehead, mouth (yes,even inside his mouth), belly, back, arms, legs, even the poor lad’s bum. EVERYWHERE.

So a decision was made.

A decision they tried to postpone. A decision that is irrevocable.

A decision that has me up and awake in his room at  2am because it’s already put his little body through hell.

It’s name is Campath. And it wreaks havoc on the immune system.

Campath specifically targets lymphocytes, which are a type of white blood cell. It does not differentiate between the good (his) lymphocytes and the bad (his donor’s).  It is an equal opportunity killer.

Up until now they have been giving him meds that kill specific types of lymphocytes. T-cells, B-cells, activated T-cells, cells that control the activation of T-cells, B-cells that dance with the T-cells under the pale moonlight and on and on and on.  Yes, the lymphocytes can be divided into more cell types than you can shake a stick at. Suffice to say these previous meds have not been successful in containing the GVHD.

So bring on the big guns.  Think Hiroshima. It’s not a pretty picture.

The Campath was administered  @ 6pm. By 6:30pm he had spiked a fever to 103.5, his heart rate was 212 and he was doing that grunty-breathing thing that earns him the high-flow nasal cannula.

He was experiencing  hypercytokinemia. Or a cytokine storm. That’s a fun term. Cytokines are crazy. Imagine a mosh pit filled with teenage boys. Bumping, thumping, slapping into each other. It’s not funny until someone gets hurt kind of thing. Now imagine the cells in your body doing all that frenzied moshing. That’s a cytokine storm.

And that’s not good.

So we do what we do best. We wait.




It’ll take a couple of days to see the effects of the Campath. He may need more doses. When I watch him in his hospital crib, the term that comes to mind is languishing. Some days are better than others, some are worse. Most are stagnant.

Today would be classified as worse. The GVHD has progressed to the point of beefy blisters on his hands and feet. That just earned him an additional drug. No waiting to see if the Campath will do it’s stuff.

Add. Another. Drug. Now.

I was asked the question whether I regret opting for the liver transplant. Rather, ‘pushing’ was the term used. Did I regret pushing for a liver transplant? Obviously this person had no idea of the devastating effects of Citrullinemia. The dance of brain damage that is the life of a child dealing with that awful disorder.

I answered simply. “No.”  I think the person was rather appalled at my answer, seeing only what the lad is experiencing right now. This person did not understand that the same Adeno virus that triggered the GVHD after the transplant would have caused irreparable brain damage before, in the guise of elevated ammonia levels.

I know he’s in pain, he may have scars. I know he feels yucky, but it will pass. I know he’s weak, but he’ll get stronger.

Is that Faith? I am not a subscriber to the notion of a greater power governing my life. So maybe it’s my own brand of Faith. Faith in the power of one’s own body to heal. Faith in modern medicine. Faith that I made the right decision for my son, that I did the best I could to afford him a life.

Even if he looks like Thing from the Fantastic Four.


It's clobberin' time...



Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , , , , | 5 Comments

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