Pulmonology Appt and Trachiitis…again!

Last night was a really rough night.   Hannah seemed to have developed trachiitis again, and she was just miserable overnight.   I must have suctioned her trach out about 30 times between midnight and 6 am (we rarely need to suction her at night normally).  It was thick, junky, and green — obviously another infection.

She also started throwing up her food again when we started bolusing her at the normal rate.   Mostly it was mucousy because of all the junk in her lungs and trach, so she barely got 1/2 of what she normally would today and at least half of it was pedialyte because the formula just seemed to heavy for her.    Poor Daddy got the brunt of it, as he must have gone through three Tshirts in a 2-hour period!

Fortunately, she was not in any breathing distress, so we knew it was trachiitis again.  Just like it was last month.

Good thing we had our appointment with Dr. Nakamura today, Hannah’s new pulmonologist.   I really liked the guy.  Listened, very knowledgeable, and really took an interest in Hannah by asking a lot of Hannah-specific questions.   Just the type of doctor we wanted.

Hannah slept through the entire appointment.  She was just exhausted.  For the trachiitis, he said that it is very common to have recurrence of trachiitis often with “these kids.”  Basically, you have an open hole to the lungs.  Bacteria grows in moist areas.  So he had his nurse take a trach swab so they could run cultures on it and gave us Bactrim antibiotic.

As for the “trach removal” question, he was also very open to the concept.  We laid everything out on the table including her breath-holding spells, Gaucher disease progression, etc., and he still thinks it is okay to remove it.  However, he does not wish to do it until Spring, as he is concerned about Hannah getting sick during the winter flu & RSV season and needing to be oxygenated.  Not saying that Hannah is going to get sick this winter, but more of a “what if” and a “better safe than sorry” concept.   But in the meantime, he will be working with our new ENT on the steps needed to make sure Hannah can be decannulated safely (he wants to do a capped-trach sleep study as well as the other things the ENT mentioned).

So we have to wait another 5 or 6 months to hopefully get the trach out.  I’m bummed, but obviously it is probably not in Hannah’s best interest of safety to have it done sooner than later.   I’m just concerned at how Hannah is going to do during the next few months.

In the meantime, he ordered us a real pulse oximeter and oxygen concentrator for the house.  He could not believe that we did not have oxygen at home (the old pulmonologist would not write for either the pulse ox or oxygen).

We could sure use the oxygen and pulse ox tonight.  Hannah is still really junky (although I am suctioning a bit less than last night), and her O2 sats are hovering in the low 90s and upper 80s because of all the congestion (based on our little hand-held pulse ox we purchased because we wanted something!).  Not enough to go to the ER with, but I will definitely be up through the night keeping an eye on her.

If all goes like the last time she had trachiitis, she should start feeling much better after her second day of antibiotics.   Hope so!