Kiera did seemingly okay with the longer trach tube with periodic spells where the tube would become occluded by her tracheal malasia. Her spells increased, and we ended up bagging her to get her through one on Tuesday 9/11. So we decided to put her previous shorter trach back in, and she seemed to improve immediately. Now she has the shorter trach in and has periodic spells of increased work of breathing from the tracheal malasia; however, her trach does not become occluded. So far she gets through the spells in about 5 minutes with increased oxygen and no bagging. I am on tenderhooks waiting for the axe to fall and for her spells to get worse like they were before the longer trach fiasco. The Cincinnati conference regarding Kiera's airway should be happening tomorrow; although I don't know when we'll hear back.
We are definitely feeling stuck between a trach and a floppy airway.
When Kiera's well...she is a joy! She's all smiles and loves to play with her toys. She is working on 2 more teeth, having cut 6 already. She's working on sitting without support, but has a long way to go. She has lost some ground over the last few weeks with her developmental progress. I took her walker to the hospital with the wheels off, and she has a wonderful time in it.
Say your prayers. She needs them.
Love,
Therese
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