Bella’s Week and Easter Weekend

The week was the same as last week – she was cute and wonderful, playing and worrying her Mama.  She discovered this box and we tried to get her to bear weight on her leg and show her how to kick.

I kept having conversations with myself about her health.  I hated how hard she was breathing.  I hated the retractions.  I hated all the sleeping.  I hated all the oxygen usage.  But I didn’t want to call the doctor.  Everyone has crazy allergies this time of year.  We were doing everything possible at home what more could they possibly do?  But in the very back of my head was this little voice that said if she has aspirated and her pulmonary hypertension kicks in and she dies because you didn’t want to spend some time in the hospital, how are you ever going to live with yourself?  Saturday we had a nurse that we don’t normally have.  Toward the end of her shift she asked me some questions.  She didn’t think Bell was doing very well and did I think she might have aspirated?  UGH!  To have my thoughts spoken by another was the final straw.  We decided we would head to a hospital and get a chest x-ray.  She told us we didn’t have to go to TCH.  We could go to a local hospital.  Ahh….my mind loved that idea.  We couldn’t be an automatic admit. I’ll take one chest x-ray to go please!  Great idea!  I’ll be able to tell the little voice in my head that she didn’t aspirate and I’ll be able to sleep again.  Yeah, and if not, at least we are doing something.

Well, it was a great idea except for the fact that we scare people – a lot.  We walked in with our vent and all of our equipment.  We bypass triage and go straight to a room.  They order the chest x-ray and then they about faint.

You will have to be transferred.  What?  May I see the x-ray?  I guess people don’t usually ask that.  I tell them it’s not that bad – I’ve seen much worse.  But she has infiltration in the right lung (pneumonia).  Ugh.  (Oh, and by the way, that’s the way her x-rays always look)

We go downtown.  We are automatically admitted with our presenting symptoms.  Long night – no sleep.

Bella in her prison.

She loves to sleep sideways.  Not sure what she’s going to do when she gets a little bigger.

 

The family came up to see us on Easter.  That was a hard day for me.

 

 

 

 

At TCH they watched her.  She stayed on oxygen (up to 5 liters when she was asleep).  She got lots of breathing treatments.  She got Lasix.  We had labs at both hospitals.  She had tracheal aspirates run.  We did an ECHO.  Endocrine doubled her thyroid med.  We did IV antibiotics.  We are doing inhaled antibiotics now at home.  And we are waiting to hear back from cardiology.  I convinced them to send us home before we got all the tests back.  We can handle most of this over the phone.  Her BP is low.  50s over high 20s or 30s and she’s fine.  Something is weird with that.  Some of the time it’s higher, but never “normal.”  Critical care attending had to be paged – no one likes the BP.  But she is warm and well perfused.  Her cap refill is good.  She is alert.  We’ll see what cardiology wants to do.

When I was talking to the pulmonary attending, I asked how could I have done this differently.  This is what she said.

• You have to get over anniversaries.: Two years ago Bella aspirated.  She went from this to this:  From cute in her Easter outfit to sedated and paralyzed fighting for her life.  Not something you get over quickly.

• Don’t wait till you are worried sick and it’s 2 AM.  Come in during the week and during working hours.  There will always be at least a pulmonary fellow if not a faculty staff that can come down and take a look at her x-ray.  Insist before the Emergency Center attending just admits you (because we are an automatic admit).
• You did the right thing.  You did what we tell you to do.  She wasn’t doing well.  You brought her in.

So what do I know now that I didn’t know last Friday.  Not much.  But I do know that she probably didn’t aspirate.  Her lungs scare the bajeebers out of people. When you smell fear in doctors, it’s not a good thing.  She’s still not OK. But she will live.  We made it through another Easter. 

I am grateful that when we are admitted we go to the PCU.  They are so kind to us there.  They all know her and love her.  We get some much love there.

Well, Bella Boo, keep fighting.  We’ll get through this spring somehow.