Mar 18, 2014

We're gonna be here a while

So it looks like we are gonna be here a while.  First, he is still needing to be on bipap and oxygen.  Today, he's up in his bed and playing finally but he can't come off the machines or he is in trouble breathing.  But he is looking and acting better.  Just still really sick. 

"Rhinovirus" is responsible.  That's the "common cold".  It's nothing.  It's everywhere.  Maybe allergies got him weak and then whamo.  Last week, his labs looked great, this week they are pretty rough.  One of the values show his body has STOPPED fighting off infections.  That’s why the antibiotics were so helpful. 

He is on bipap and oxygen around the clock.  We take it off every 4 hours to do his breathing treatments and before we can get it back on, he's desatting.  I tried for a few minutes just now while I cleaned his face. He was struggling to breathe and was desatting in minutes.  He was asking for it back on.  The issue is that he has these "mucus plugs" that are causing him to lose ability to breathe. They have a machine here which helps it.  We have nothing like it at home.  So it's where we need to be!

The good news is that he's at least playing and looking perkier.  It means it's working.  And the other good news is that he no longer has a fever.  He's on antibiotics so the theory is that he had a pneumonia (bacterial) and this is killing that.  Thus the reduction of fever. 

The pulmonologist said not to change anything today.  His lungs are still pretty junky.  (Meaning a mild pneumonia.)  We will take it day by day. 

Now about his line ... it's been repaired but it's truly on it's last, last, last leg.  We all discussed it and feel that it needs to be replaced.  It's time.  Sadly.  There seems to be no other safe alternative.  This could rupture and break the vein (catastrophic).  Or another break could cause an infection.  So ... the team and I decided it's time to consult the surgeon. 

He was consulted today about what needs to be done prior to those surgeries and when to schedule them.  He feels that we will need to do another dye study .  The last one was inconclusive about the viability of his veins so they want to try a slight alternative.  And besides, that was back in June. Things might have changed since then.  We will do those tests as soon as he gets pulmonology clearance. 

And then he wants to do these procedures while we are still inpatient.  My best guess?  Monday or Tuesday.  Then we stay for at least one day after that. 

I’ll write a separate blog about the specific complications and concerns for the line replacement as well as the secondary procedure they’ll be doing concurrently. 

For now, thanks for the continued prayers.  I’m definitely feeling much improved.  Manny is on the mend.  Now please cover the rest of the family.  Today Kaley is saying she’s not feeling well.  And not sure how Dan is holding down the fort doing parts of my job plus his.  The kids are homeschooled.  It’s a big job. 

And Finally … Manny had several more outbursts in his sleep.  He was clearly traumatized by the whole vascular debacle from a few weeks ago and this one (though a quick one) retraumatized him.  He’s never had nightmares before.  I told Leslie, the Child Life lady.  We did play therapy with Ivs today.  It broke my heart.  One of the things she had him do was to pretend with a doll.  She spoke for the doll, “Ow. That hurts. No pinch” and stuff like that.  He just kept poking and poking.  No mercy.  It revealed a lot into his wounds. 

He also hates the breathing treatment machines we’re using currently.  He begs me to stop! Tonight he said “No!” And the therapist said, “We have to do this to help you get better so you can go home” (and normally this works like a charm).  But tonight, he said, “Then let me be sick.”  (Heart sinking)

Nurses never think about this … when they are doing something traumatic to a kid, they say, “Mama’s right here”.  This sentence is meant to say, “Be comforted for a familiar face is near by.” But what the kid hears, “Mom is standing by watching this and LETTING this happen.”  Manny is never thrilled with me when we are in the hospital.  He’s very angry at me.  And this was also depicted in his play therapy.  And he is angry in general.  During his play time, he got hostile.  It stirred up much emotion. 

I sat by watching and trying not to cry.  Trying not to feel responsible for at least part of his pain.  He needs the treatments.  He needs the medicines.  But it’s my job as a mom to protect.  And at least every 4 hours here at the hospital, I let them do things to him that he considers torture.  It’s for his good but it doesn’t mean he has to like it … or me. 

Praying that tonight he will sleep without nightmares. 

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