Whew!

In case you’ve forgotten how quickly things happen/change in the BMT/Childhood Cancer world, let me tell you a little story……

Gregory and I  have been plunking along these last few weeks.  Getting through the days, counting down to Seattle.  Working through raging steroid emotions, a seriously declining appetite.  Weekly blood draws.  Things have been boring.  Counts are stable.  Health has been good.  Boring is great.  Then.

We had our regular weekly blood draw on Monday morning (the 10th).  Everything is great, cultures have not grown anything.  Tuesday night around 9:00 Gregory said he was cold and started shiver.  Not just a little “I’m chilly” but full body, teeth rattling, fetal position chills.  He’s done this before and I  knew what was going on.  I took his temp.  98.4.  Waited two minutes.  98.8.  Then he clutched his head in the throws of a big headache.  I called the Hem/Onc unit and they put a call into his doc.  I started to pack.  Frantically.  Ten minutes later I retook his temp.  101.5  Doc called, sent us to the ER.  When Gregory starts to chill like that I KNOW that a hard, fast and big fever is on it’s way.  

We hit the ER around 10:00.  Everything takes so long when you need it to be immediate.  We needed to draw blood cultures, then start his first antibiotic.  Drawing cultures after you’ve started an antibiotic can skew the cultures.  I  don’t know if I’ve mentioned this, but we have been having increasing difficulty with Gregory’s central line.  You can flush (put things in/through his line) but we are unable to draw from his line without using a drug called TPA first.  The theory is that his body is growing a sheath of blood over the exit of his central line, preventing any blood from coming out, but allowing for fluid to pass through.  The TPA kicks loose the sheath.  I’ve been placing the TPA in his line before he goes to sleep, on the nights before our clinic visits.  This has been working like a dream, but when we are going in for an emergency, we can’t wait the extra time for the TPA to work.  When it’s placed a the clinic or hospital, it needs to sit in his line for 1-2 hours.  Anyhow.  In the ER we were not able to draw from his line.  TPA had to be ordered, IV therapy had to be requested, the TPA  needed to be placed and we had to wait.  (Prior to this Gregory did receive his Tylenol.  His temp at this point was 103.1)  Since we were on a time crunch and needed to get his antibiotics started, we let it sit for only 30 minutes.  Thankfully he drew and we got our tests and cultures ordered.  Or did we?  His first antibiotic was started.  (The cultures were done wrong and we had to re-draw them, once we got to the Hem/Onc unit, after his first dose of Antibiotics.  I KNEW they were wrong.  Watched it happen.  Failed to have the guts to say anything.  Shame on me.)

We got his CBC back.  He had just had one done 36 hours before.  His platelets and hematocrit had taken a hit.  His white blood count on Monday was 6.8.  Tuesday’s white blood count?  1.1.  Yep.  One point one.  This infection hit hard, fast and big. 

All of this took absolutely forever to get accomplished.  We finally hit the unit at 3:00 in the morning, Wednesday.  By the time we did our unit admit, went over meds, gave him a stress dose of Hydrocortisone, started another antibiotic, got settled.  It was 5:00 am.  Meanwhile, Gregory is so sick that he slept through most of it.  Oh yeah, he was puking, too.  Just a reminder, infections cause his GVH to flare.  I finally shut my eyes around 5:30 and was up at 7:30.

Gregory has been having decreasing oxygen saturation.  They measure the amount of oxygen in his blood and for the last several weeks it’s been at 92.  It should be 100.  On Monday’s visit, Dr J had ordered a high resolution CT to rule out Lung GVH.  My third biggest fear.  The appointment was for Wednesday afternoon.  With everything else going on, Dr J moved up the CT.  They showed up mid morning.  We went down to radiology.  Gregory did absolutely fantastic for the procedure.  He was feeling like total crap, but he cooperated and did say a peep.  As they were getting to the end of the CT, he started to shiver.  During these procedures I  am able to stand with him, comfort him, touch, hold.  We boogied back upstairs and got more Tylenol on board.  I think.  The next couple hours are a little sketchy.  His blood pressure started to decline.  A fluid bolus was administered.  They started a Dopamine drip to help his body bring the pressure back up.  It didn’t work.  Upped the dosage.  Nope.  Upped it again.  Still not yet.  Gregory was septic.  He needed more intense care and we were shuttled off to the Pediatric Intensive Care Unit.  As we were rolling out the door, Dr J ordered another fluid bolus.

Once we were settled into the PICU, all of his lines were attached, his blood pressure started to regulate.  I think it was that last fluid bolus.  We spent the night in the PICU, he was weened off the Dopamine and was off by early morning.  He started to chill, again, at 5:00 Thursday morning.  This one was bigger.  I think part of it is because his GVH is flaring.  He is in gut pain.  He spent a few hours Wednesday night moaning with gut pain.  When he started to chill, we got Tylenol in him and he shivered for about 15 minutes.  Curled up, his whole body shaking, moaning in cold and pain.  He had heaved all his PM meds Wednesday night, too.  Infections are hell on GVH.  (See why I’m so protective!)  We had the all clear to leave the PICU late Thursday morning.  By early afternoon we were back in our room in the Hem/Onc unit.  So incredibly tickled to be back. 

Wednesday’s White blood count was 10.5.  With those antibiotics on board his body was able to produce and keep some cells.  His marrow is working overtime, though.  His platelets dove to 196 and his hematocrit was 26.  (Monday:  White Blood count 6.8,  Platelets 319, Hematocrit 30.  Normal ranges:  WBC 5.13.5, Plt 250-550, HCT 34-40)

What it all boils down to:  Gregory has a Gram Negative Bacterial blood infection.  Gram Negative Bacteria live in the gut and colon.  Gregory has been experiencing some constipation and has been pooping pebbles.  The theory is that he strained to poop and tore, causing bacteria to enter his blood stream.  There really is no way of knowing where this came from.  This is just a guess.  Needless to say, once he gets past his current diarrhea he will be in a stool softener.  In my best layman’s terms:  Gram Negative Bacteria have a “skin”.  When antibiotics are given and start to destroy the bacteria, the skin ruptures and releases toxins into the blood stream.  Leading to sepsis.  Before this all happened, I already knew this information.  Gregory had flirted with a PICU visit, under similar circumstances, last August at 60 days post transplant.  It did not come as a surprise to me when we wound up in the PICU.  He responded as expected, with his lack of immune system, in this situation.  I knew that going to the PICU was simply a place where they had more monitoring, one on one nursing care and an intensive care doc right there.  He went exactly where he needed to go.  He responded to treatment and we had a very brief stay.  I really thought we were going to escape from this experience without a PICU experience.  This was our first.  The PICU Experience.  It’s another world.

I’d like to write more about The PICU Experience, but it will have to wait.  I promised a certain little man that his new Prince of Persia Lego set would be built.  Thank you Little Wishes!!  I’d also like to snag some z’s.

So much love to all of you who caught snippets of the last few days and were right there with us.  One foot in front of the other, day by day. 

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in Childhood Cancer. Bookmark the permalink.

One Response to Whew!

  1. Hernan says:

    Poor little guy! I ttoally feel feel your pain. I had one son go through a staph infection in his neck at 7 months. We think he got it through an ear infection that was on the same side as his staph infection. His neck kept getting bigger, and they couldn’t tell me why. I was afraid he’d stop breathing! We had to give him home IV antibiotics, he got the rhoda virus from the hospital, then got allergic to the meds he was on at home. Then our youngest got meningitis at 2 months. They never could tell if it was bacterial or viral. I hated that he had to get a spinal tap done! They put a pick line IV in his ankle because he wasn’t walking yet.Both cases had a high white blood cell count, and fevers.Scary stuff, but both of my kid’s are fine now. No long term effects. They are now 2 and 5.I hope all goes ok with your son! I’ll be thinking of him and your family!!! I know it’s so hard having a sick one on the whole family. I’m following you back!

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