Possible pneumonia again?

Trachiitis has struck…again.    This is the fourth time in as many months.  We had a great week of very little secretions, starting to eat baby food again, and we were just ready to start the passy muir speaking valve again after dealing with trachiitis for the previous 3 weeks.

It started a couple of nights ago when I was on my night shift with her.   She started getting really “gooky” with a greenish-tint “gook”.  I was suctioning her constantly throughout the night.   Then the throwing up mucous started up again, which usually happens when she has more secretions than normal and because she doesn’t have swallowing issues like most kids with traches, she swallows it all.  It then builds up in her stomach, and the only way to release it (because it is a lot) is to throw it up.   As hard as we try to get it out by her trach suction, she is so good at cleaning it out herself that we maybe only get about 10% of it through suction.

We missed her Cerezyme treatment on Monday (rescheduled for this Thursday) because I didn’t want to go through a 3-hour treatment session with her throwing up and being uncomfortable on me.

Today, we went to the pulmonologist and saw his nurse practitioner.  We talked about trach care, and since we do trach clean care twice a day, we don’t think the trachiitis is from that.  Then we talked about what she grew out last time — pseudomonas and methicillin-sensitive staph aureus (not to be confused with MRSA).  These are pretty strong bugs.  That’s why we were on the Cipro.

The NP also listened to her chest (she had fallen asleep by this time), and he noticed a lot of junk in her right lower lobe.  Possible aspiration pneumonia.  The possible theory is that because she has so much secretions from the trachiitis that she is starting to aspirate them into her lungs.   If that is the case, that could be a HUGE problem for us.

We talked about the risks of keeping the trach until Spring versus these constant bouts of trachiitis.  Because of the pneumonia issue and the flu/RSV season upcoming, they will not consider taking the trach out.  If she does get hit with pneumonia and has to be hospitalized, the trach will basically save us from some more serious issues.  It makes sense, but it is just such a crappy catch-22.

So the plan of action is this:

• Chest xray tomorrow morning, first thing .  They want us to wait for the films and bring them to the pulmo to take a look at them asap.
• If the chest xray does show aspiration pneumonia, then the conversation starts for fundoplication surgery, which will not only stop her from throwing up her secretions and, in turn, aspirating them into her lungs but will also relieve her reflux symptoms.
• Cipro prophylactically, starting tonight.
• Albuterol treatments every 4 to 6 hours.
• CPT (chest physical therapy) every 4 hours for 10 minutes at a time.

The hope is that the chest xray is actually clear, and she is just junky from the trachiitis.   She has had no fevers, and the only other outward symptom is fatigue (she is tired more than usual for the past few days).  But then again, she is also teething with 4 teeth breaking through, including her canines!    That has not helped her secretions either since drooling plus secretions just adds more junk in her tummy.