A little piece of heaven

So as the dust has settled today the big question on everyone’s mind has been: So how in the world did they manage to give him a completely incorrect MEDICINE??!!

Here’s what happened.  At 6:30 PM Nathan was moved from PACU to the Pediatric Floor.  The nurse settled him in, gave him meds, and then it was time for shift change.  About 2 hours later, a team of doctors came into the room and then ran out, horror etched on their faces.  After about 20 min’s, an ICU doctor came to speak with us.

“I’m so sorry, but I have to inform you that we accidentally gave your son the wrong MEDICINE.  Not an incorrect dosage or the wrong rate, but the wrong medicine altogether.  Instead of getting an antibiotic, he was getting IV sedation fluids.”

My first question was, “How could that happen?”  His answer was, of course,  I have no idea.

Since then, I have spoken with the Patient Relations Manager at CHLA and the nurse manager to discuss the situation.  Fortunately nothing terribly negative came from the incident for Nathan.  But of course I am horrified that it even happened to being with.  What if it had been a more dangerous medicine?  And when I mentioned this to one of the doctors, their answer was, “This one was bad enough.”

Apparently this is a medicine that should’ve never been out of the ICU environment.  So for this medicine to get into a child on the floor is inexplicable.

I filed a Grievance with the hospital and they’ll be launching an investigation.  Personally, I don’t think they should blame the nurse as there should be fail safes in the system.  They will be looking at the entire process/system, holding a review, and trying to change the structure to protect other kids from having this happen to them.

I figured that if I stayed quiet, no change would come about, and this could happen again.  And next time, perhaps the consequences would’ve been more severe.

Why these things seem to happen to our guy, I don’t know.  Maybe he is an agent for change in this world.  I’m just deeply grateful that he is okay!!

 

 

I should be sleeping but I can’t.  Today was a tough day.  3 days post surgery and I thought by now Nathan would be on his way home.  Instead today I watched him wither away in front of my eyes.  He became paler, struggling more and more to breathe, not waking up.  He slept for 29 hours straight.   I kept telling the doctors and  nurses that something was wrong, but nobody believed me.

Finally I went on Facebook and mentioned the symptoms to other moms of children with special needs, who gave me a bunch of ideas.  I then called Nathan’s pediatrician, who called the hospital and demanded they do something.  I mentioned the possibilities that the other moms suggested, and they did the blood work to check for these.  Sure enough everything they suspected was correct.  He lost too much blood during surgery and needed a blood transfusion.  He is getting the blood as I type this.  He also needed extra meds for his lungs, which collapsed.  He may have pneumonia on top of everything else, but we are watching and waiting to see how his lungs progress.

For a moment there I was terribly scared.  After Gavin’s death I’m extra afraid.  What terrified me even more was that he wasn’t waking up.  I asked everyone to pray.  And within a short while, a new doctor came on board, and she was single-pointedly focused on helping Nathan.  She got an x-ray tech to come up immediately.  Had the respiratory team work on him right away.  Asked for labs instantly.  Everything happened right away.  Shortly they realized he needed blood, and that he probably has mild pneumonia.   His heart rate has been terribly high so they also switched from albuterol to xopenex.

Just as I was considering requesting an EKG, he opened those big brown eyes and gave me a glimmer of a smile.  There was a light in his eyes I haven’t seen in 2 days.  I sat with him and held him as best as I could while he has a massive cast.   I asked him if he wanted me to sit with him and he blinked for yes.  He also wanted to watch a show – he picked The Lorax.  He was awake for about 2 hours, with a little bit of pain but not too much.  Then we had to deal with a diaper blowout and a busted IV.  He was calm while they set up a new IV.

He’s now asleep. He’s requiring 5 Liters of Oxygen.  They backed off on all the sedating pain meds to avoid depressing his respiratory system.  As of now they will only give him Tylenol and Motrin.  His hear rate is down to 128 which is much better than it’s been all day (he was averaging 170)!  Temperature is also down from 102 to 99.

I’m hoping we are on the other side now.

The whole thing has been so scary.  This is the 2nd time he’s almost been killed by doctors.   The first time was when he was a baby by Dr. Lazaref.   The 2nd time was Friday, when the hospital switched out an antibiotic for a narcotic/sedative, and accidentally gave him a mega jumbo dosis of Precedex, a heavy duty narcotic for ADULTS, that should ONLY be used in an ICU setting.

I also what would’ve happened if I hadn’t consulted other parents on Facebook? They would’ve probably continued saying Nathan was okay until more serious negative results occurred? As it is, I feel that this situation would’ve gotten out of control very fast, he was getting worse by the minute.

I’m so grateful for so many lovely friends all over the world who love and pray for Nathan.  I believe those prayers facilitated a transformation.

And as I sit here watching blood being dripped into his body, I pray and pray and pray.  And with every passing day I gain a clearer, deeper understanding of the preciousness of Nathan’s life, what a fortunate gift to us every single breath he takes.   Life is so fragile, so volatile.  This has been a reminder to enjoy it deeply, especially Nathan’s.