Posts Tagged With: Hematology

4 months ago…..

4 months.

I’ll just let that sink in.

4 months ago today, Capt Snuggles had his liver transplant. I thought it would be the end of the fear.  The end of the constant worry over brain damage and the downward spiral an episode of high ammonia can cause.

Instead it was just the beginning of new worries and even greater fears.

*sigh*

Everyday seems to bring new problems, new mysteries to solve.

Yes, I said mysteries. We already knew Capt Snuggles was an enigma. But he proved it double-fold on Friday. After a random quiet day on Thursday, Friday dawned with increased lymphocytes and additional redness to his skin.

After his dressing change, the BMT doctors ordered another round of campath. It’s only been 2 days since his last dose, so this is serious. His lymphocytes showed re-emerging T-cells.  T-cells are not our friends.

During his infusion of campath, a very disturbing thing happened.

He turned purple.

His hands, his feet, and most of the areas where the renewed redness had been, turned a dark, almost black shade of purple.

You can imagine how quickly ALL the doctors came running. After double checking the ventilator, drawing blood for numerous labs, checking and double-checking his heart and lungs and examining his skin, the doctors were still perplexed.

He started the new antibiotic 3 days ago. He was receiving the campath infusion when he initially turned purple, so the Chaperones thought maybe there had been a drug interaction or reaction, so they turned the campath off.

Slowly the purple went away. Maybe it was a rare drug reaction. The pharmacist was called. While they waited for some answers, he turned purple again. Not quite as dark as before, but definitely purple.

Most of the blood-work came back stable. He was slightly acidotic, so they gave a dose of sodium bicarb, but really, other than that, nothing jumped out as the culprit.

Clinically, he was stable, though they decided not to continue with the campath, just in case. Of course, this all had to happen as I was leaving.

Yes, you heard right.

For the first time in almost a month, the Hub was bringing the boys down to spend the weekend. I wanted to send them home. I wanted to pull my chair up and sit alongside Capt Snuggles’ bed all night long.

But I didn’t.

Hub picked me up from in front of the hospital and we went to spend the night at the RMH with the boys.

It was lovely to spend the evening with the boys, but it was mind-numbing to think of David and all the things that could possibly go wrong overnight.

It’s a tough balance.

Made all the tougher when the phone rings at 6am and it’s the Fellow on the other end. Fortunately it wasn’t catastrophic, he’d had a particularly large poop and they needed to change his dressing. They needed to use the propofol to sedate him and had to have consent.

But that call at 6am had my heart-pounding and my mind racing.

I went ahead and got ready to go over to the hospital to attend morning rounds. Before I walked over, I checked his 4am labs.

His hemoglobin was low, his platelets were low, his potassium was low, his IVIG level was low, but his lymphocytes were high. They were at 3% Friday, when they decided he needed the campath. Now they were at 14%. And to make matters worse, when I arrived at 7:30am – he was still purple.

Maybe we should just agree it’s the Worst. Month. EVER.

They agreed at rounds that he needed blood, platelets, IVIG, a potassium bolus & he needed to make-up the campath they stopped yesterday. They agreed they would watch him very carefully before and after each infusion he was going to get. (All this was in addition to the 4 antibiotics, anti-fungal, IV nutrition, sedation, pain meds, & steroids he gets daily.)

And I was going to Chuck E. Cheese’s with the boys for Jonathan’s birthday.

I know he’s in good hands, I do. But it doesn’t erase the guilt I feel when I have to leave him. Just as I know the boys are taken care of when I’m not there,  it doesn’t erase the guilt I feel for not being there when they need me.

Of course, I went to Chuck E. Cheese with the boys. But I thought of Capt Snuggles as we ate pizza and played games & Jonathan opened his present’s. Just as I think of the boys, as I spend endless days and nights sitting with Capt Snuggles.

All I can say is…….

Worse. Month. EVER.

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Tiny Shreds of Hope

I slept. David slept. It was a peaceful night.

*thank you*

The propofol holiday seems to have helped re-settle him a bit. They were able to cut down on 2 of his continuous pain meds and stop one altogether. When they stopped the propofol this morning, they restarted all of his continuous pain meds, just at a lower, more reasonable dose.

Yesterday he was receiving PRN doses of those 6 pain meds at least every half hour (sometimes closer to 15 minutes). Now he gets 2 each time and he’s going anywhere between a half hour to an hour.  This morning he slept peacefully for 2 full hours before he needed any PRN’s. So his appetite for PRN’s has somewhat diminished AND they seem to be more effective at calming him down.

*thank you*

Capt Snuggles temp this morning was a snuggly 99 degrees. Woo Hoo!! We were able to turn down the blast furnace that has become his room, tear off all those layers of  blankets and turn off his personal space heater. At least for a little while.

*thank you*

They think his hypothermia is a combination of 2 things.

1) The fact that the insulating layer of skin has been sloughed away.

2) The sheets of burn-gel they use for his dressings.

The stuff comes in 10×6 inch sheets. It feels like snot and is difficult to work with. They use this as a cushioning layer between him and the gauze wrapped around him. It’s used in burn patients because of the cooling effect it has. The Shriner’s docs just neglected to mention this cooling effect to our doctors.

His temp dipped down to 92 degrees during his dressing change, but is now holding at 96 degrees.

*thank you*

Now, on to the lymphocytes. Of course, the first thing I did upon waking was to check his labs. I can view all of his labs online through the hospital’s patient care site. They weren’t there. Somehow the 4am blood-draw didn’t get ordered correctly and they didn’t have the lymphocyte totals at rounds.

So we had to wait. 2 hours. It seemed like a forever wait since it was really the only lab I wanted, needed, absolutely had to know the value of.

So imagine my disappointment, frustration, mortification when I learned his lymphocytes were reported as 12 percent.

but they were zero yesterday….

How could they have jumped like that? UGH! I just wanted to scream, curse at the universe, rail against this unfairness. I felt deflated, defeated and betrayed.

The oncology doctor arrived in short order, lab slip in hand, demanding another vial of blood. She walked it down herself to the oncology lab. He is priority, he takes precedence over that pesky queue of lab orders, he ranks supreme in their quest for answers.

The labs’ job is to determine what part of that 12 percent is T-cells, B-cells or NK cells. NK cells are not a problem. Those pesky T-cells are and to a lesser degree the B-cells.  If the T-cell count was in the majority, they would know the campath is not working. So we wait.

Another 2 hours.

Which, in the big scheme of things, isn’t very long. Especially when they are doing specialty lab work that should normally take a number of days to complete.

I do not like this distinguished honor.

During this excruciatingly long wait, we managed to re-dress the babe, yet again. I say “we”, because I am an active participant. I am the only constant from day-to-day. I end up showing the nurses who are new to the re-dressing party, how to do it. If I could get a nursing license based on experience alone, I’d be in like Flynn.

If you can look carefully past the remains of blisters and dead skin. If you ignore the weeping and oozing areas of exposed skin. If you really, really strain your eyes. You can see the speckles of white, the tiny pinpoints of new skin emerging.

You can see that his skin is starting to heal.

*thank you*

By the time we are finished and have him bundled as before, the oncology doctor comes back. And she doesn’t have that strained “I have to report heart-breaking news to this mama.” kind of look. She looks, well optimistic.

The good news is the lymphocytes are mostly NK cells.  NK cells are irrelevant.

Forgetaboutit.

The not so good news is that there is evidence that those fugly little T-cells are making a come back.

Just like that damn Energizer bunny.

So, he received another dose of the campath. Campath does not kill NK cells, so now they won’t be able to rely on his lymphocytes getting back to zero. They will have to repeat today’s phenomenal breach of protocol in order to get an accurate assessment.

I’m okay with that.

Each day I gather these tiny shreds of hope. I dust them off and tuck them carefully away. I don’t want to lose them, not a single one. I treasure each and every one of them.

*thank you*



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Johnny Depp, Elvis and Super Mom walk into a bar……

I was asleep when they arrived.

 Dead to the world, asleep. Dreaming of Elvis and Johnny Depp, kind of asleep. oh, and I’m pretty sure there was drool involved.  Waking to one of our Chaperones moving about the room, is one thing. Waking to our Favorite Fellow calling my name amidst an audience of a dozen or so pairs of eyes is disconcerting, to say the very least.

I tried, I really did. I tried to pay attention to the roll call of lab values (getting longer everyday). The discussion of whether 16 different antibiotics, antivirals and antifungals was really necessary (okay, maybe not 16, but enough to treat a small country, nontheless).  And (here’s the biggie) the rather loud and somewhat heated discussion of  whether imaging his head (again) would give us an answer as to why he is behaving badly.

I tried to follow along, but all I could think of was the fact that I was standing in my stocking feet (Thank God I wore socks to bed…) my hair was a rat’s nest and I’m sure my breath could have taken down the person in the back row. That, and I had been dreaming about Elvis and Johnny Depp, what was up with that

 Stellar parenting, I know.  

Or maybe not.  After all, we have been incarcerated a long time and quite frankly, rounds are boring. Yep, I said it – rounds are boring. Pure Charlie Brown, wma wma wma. I know it’s my kid and I should be totally fascinated with the fact his soluble IL2 receptors are in the 4000 range (not really a good thing, btw). But some days I actually wonder if my head can explode from the prolific amount of information that is thrown at me each day.

Which takes me back to the loud and rather heated discussion over imaging the poor lads’  brain again.  It was 2 to 1 in favor of scanning, so Capt Snuggles earned a ride down to CT. Which, in turn, earned him a repeat spinal tap.

The day wasn’t all bad, though. I earned Super Mom status today. I know that’s hard to believe in light of my nocturnal infatuations with Elvis and Johnny Depp, but it’s true.

The fine print on the poster reads “My cape is only worn on special occasions!”

Thank you to the gals in Child Life for brightening our days with toys, laughter and official proclimations of Superness!

I wonder if Elvis and Johnny Depp are still waiting for me…..

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Tourism, revisited….

Thrombocytopenia. 

It’s a big word isn’t it?  Repeat after me throm·bo·cy·to·pe·ni·a. Good job. I’ve only had to say it out loud a dozen  times to be sure I could pronounce it correctly.

“What does it mean?” you ask. 

Please try to keep up, young grasshopper – it’s been a long day………

 Thrombocytopenia (have you googled it yet? You know you want to.)  oh alright, I’ll tell you –thrombocytopenia means low platelet count.  Platelets, really? hmmm,  you say and what do platelets do exactly?  Yes, you – I’m asking  you because I really don’t have to time google all these medical terms……

oh alright, These are red blood cells (ignore the fact they’re purple….) According to WIKIpedia the platelets are the little spots I circled in red.

 They help your blood to clot.

If you have enough of them, that is, which apparently Capt Snuggles doesn’t. I mean he did, then he didn’t, then he did, but now he doesn’t.  

Keep up, grasshopper….

Add this to the long list of things that have kept us incarcerated for the past 70 + days and you guessed it – we landed back in the PICU

There was much fanfare heralding our arrival. That PICU sure knows how to throw a welcome home  back party.

You know you are loved when the PICU Attending and PICU Fellow both change your poopie diaper.

Capt Snuggles has that effect on people.

It was very disheartening to have to go back to the PICU, no doubt about it, but not unexpected.  Several things happened between last night and this morning to warrant our return. And while I was hopeful, he would straighten up and fly right – I was also realistic in our expectations of his care. 

And I was holding out for the room with a view….

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Is this thing on?

I feel like I’m standing at a podium with a microphone….high pitched squeeeelll….”Is this thing on?”  Tap, Tap, Tap  “Testing, 1,2,3…” clears throat….Welcome ladies and gentlemen to the blog of our life.  (*chuckles*, that sounds like the lyrics from Zooey Deschanel’s cotton commericals….”Fabric of Our Life“)

I’m new to the world of blogging.  I’ve been known to keep a hand written journal or two, but it’s been suggested to me (and not just by my family….)  that maybe I should share my life experiences with the world. So here I am. Are you ready? I think I am.

Today is Day 65 of our hospital stay. That’s right, I’m typing from the confines of my son’s hospital room. (Thank you Melissa for the use of the laptop, otherwise I just might have lost my mind sitting here.) David is 5 1/2 months old. On August 18, he received a liver transplant.  Surgery and recovery went well. Better than well, he rocked! 

  Then he got sick.

 Septic shock sick.

 ICU sick.

 Intubated sick.

 We almost lost him sick.

 So here we sit in the ICU at Children’s Hospital in Cincinnati. We’re old friends with CCHMC,  2 of my older boys have served time here as well. (Please read the “Introductions and Life goes on…” pages  – I’m sure it will answer some of those questions you’re asking.)

David has a virus called Adeno. He is immunosuppressed from the transplant so the Adeno had a field day with his immune system. The treatment? Lower his immunosuppression, administer an antiviral drug called Cidofovir, replenish his antibodies with IVIG and wait. 

Wait.

Wait.

Wait.

Are you still there? Because we’re still waiting.

While we were waiting, an extremely rare problem developed. An extremely rare, extremely painful and potentially life-threatening problem, Graph Vs. Host Disease.

As if he needed any other problems!

 GVHD is relatively common with patients who have had bone marrow transplants. So common in fact, that they are prepared for it to happen after the bone marrow transplant. Not so much with single organ transplants such as a liver. Our team firmly agrees that with the over 500 liver only transplants that have been completed at this hospital, our David is the only one to develop GVHD.

A little about GVHD  – did you see the movie “My Sister’s Keeper”? Read the book? If so – then you’ve heard of the painful rash that develops. It can be as severe as a 2nd degree burn. Fortunately, he didn’t get as bad as that. 

So what is Graph Vs. Host Disease? Well, basically, cells from the donor organ (graph) attack the immune system of the recipient (host). This causes an inflammatory response like the skin rash. It can also attack the gut (it did), the eyes (it did) and the lungs (it didn’t). Treatment for GVHD? High dose steroids, high immunosuppression. Do you see the contradiction in care? Treatment  for Adeno and treatment for GVHD are the exact opposite.

We’re still waiting……

So while we wait, allow me to do 2 things:

1) Tell our history….

and

2) Share our future..

I’d sure appreciate the company while we wait.

 

 

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

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