Triple whammy

 

Ellie is just inpatient at Primary Children's Hospital.  She has a UTI (ecoli), parainfluenza (Croup---a virus), and a bacterial infection in her right lower lobe of her lungs.

 

Virus' are not treatable with antibiotics, but the other two are.

 

Let me back up the story to give you the full picture of what is going on.

 

In September she had a scope of her airway and they took a lung sample.  She had making a weird Darth Vader breathing sound sometimes.  It was dry sounding. But we weren't sure what it was. So pulmonology teamed up the ENT and they went into the OR together to have a look.

 

They found that her airway was tortuous ( twisty).  This created ledges for secretions to pool within her upper airway.  (Upper airway means nose, mouth, trachea).  I suggested that this was possibly created by her scoliosis.  She has rods from T3 down to her pelvis, but above that her spine is still very curved.  The 2 Dr's said they hadn't thought of that and thought that was highly possible.  They did not think we should fuse her neck.

 

We added a little more suctioning each day to try and clear these ledges of secretions.

 

They found that she had narrowing of her airway  where she has scar tissue from her old trach site.  But felt like it was OK and they didn't want to do anything about it.

 

The lung sample grew out strep.  So she was treated with oral ( gtube) antibiotics.

 

These antibiotics helped a ton.  She became so much more alert and smiley.  I hadn't realized she was feeling bad, but after the antibiotics it was clear that she was feeling better.

 

She used to get an inhaled antibiotic ongoing for years.  But we stopped it a while back thinking maybe she didn't need it anymore.    I need to discuss it with pulmonilogy and see if she thinks we should start back up.

 

In mid Oct she came down with a cold.  By  Halloween day she was struggling to breathe.  We brought her to PCH and were send home with antibiotics.

 

The antibiotics helped her improve and get off O2 (she is not normally on O2).

 

But she kept getting little colds off and on after that until now.  So I'm not sure if she really ever fully recovered from that illness in Oct.

 

Two weeks ago her right ear was draining gunk.  I did not treat it because most ear infections will clear up in their own.  So it is better to watch for a few days and see if it can clear itself rather than becoming resistant to antibiotics.  The ear did stop draining on it's own.

 

This week..

Wed- very sleepy

 

Thur- elevated HR, junky breathing, very little urine out, fever, needed O2

 

Fri- HR back to normal, breathing sounded improved, no fever, o2 able to be lowered a bit, urine lower than normal, seemed stable and improved from day before

 

Sat- about the sasme as Fri

 

Sat night- lots of suctioning, needed more o3 support and had a lot of desats ( o2 going too low)...rough night at home

 

Sunday- working hard to breathe, needed 3 liters o2 ( up from 1 liter on previous 2 days). 

 

Sunday afternoon-Decided to come in to Emergency Department at PCT.  Arrived at 2:45 pm.  Met shock protocol (meaning lots of vitals are out of normal parameters...person needs immediate help).  We love meeting shock protocol...it makes the ED go 2 or 3 times faster...ha Ha! 

They ran snot, urine, chest xrays and blood.

 

Once they found the UTI and pneumonia they decided to start antibiotics and admit us.

 

Sun night- even more rough than Sat night.  I was worried several times they were going to want to intubate  (breathing tube into mouth down into throat).  Lots of suctioning, lots of o2, trying switching back and forth between bipap and nasal canula.

 

At 2 AM I snuck her some mentholatum and afrin and sudafed...dont judge..ha ha!

It helped.  She went to sleep at around 3 finally and we slept until about 9 am.

 

Mon morn- she had a fever and still does at 10 am,  even after ibuprofen and acetaminophen.

Breathing is not as labored today.

 

Still pretty sick though.

 

After last night I am glad we brought her in.

 

It is frustrating that last winter when we stopped bipap...there were no pneumonias.  This year we are trying to follow Dr orders and do bipap and we are back to multiple pneumonias.  But if we don't do bipap then her lungs collapse like last spring.  There is no good solution.