Kaylis right ear has been draining (she has an ear infection), even though she was on Augmentum (antibiotic) for her jaw distractors, and Cipro (ear drop antibiotic). Kayli went to the ENT (ear, nose, throat dr) and had an ear swab recently, to figure out why the drainage isnt clearing with antibiotics. We should get the culture results back by tomorrow. Fortunately, the ENT was still able to do the procedure to increase trach size. Kayli was tolerating the new trach size well, but now has bouts of desats (her oxygen levels go down), so we are keeping track of her sats, and/or to see if there is a pattern, or if it is the bigger trach causing the recent changes. When weve tried it in the past, Kayli has been stubborn and rejected the larger and more appropriately fitted trach, because she loves to breathe around the trach (which is typically an indicator that she really doesnt need the trach). Although the larger trach was a step in the opposite direction (for de-cannulation), the pulmonologist (dr) recommended it to see if Kayli breathes easier without the leak. The jury is still out on that, as it takes some time to see if she will adjust/accept the larger trach. The ENT still thinks Kayli will do well capping (closing off her trach), so after Vital Stim (therapy) starts, we will talk about setting up a capping trial. If she passes that trial, the next step would be a sleep study while capped. If she passes that, then she would be a candidate for de-cannulation (removing her trach). We will be fighting the de-cannulation, but we will easily accept the capping. Basically, we are afraid of loosing Kaylis secured airway. But... we suppose it will be something to consider if the professionals think Kayli can handle it, although it will take a strong argument, and some surgeries (tonsillectomy, cut back her uvula, more jaw distraction, etc) before we seriously consider de-cannulation. Kayli has an appt at 7am tomorrow morning (for Vital Stim), so we are calling it an early night! lol We hope your days have been filled with love and happiness, since we last updated.
Posted on: Fri, 11 Jul 2014 02:19:36 +0000
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