Aimee did well through her sedated scope today and was so happy to be leaving the hospital for home.
The procedure went well, though there is always some drama with bringing in such a complex patient. Unfortunately, we didn’t really get the results that we had hoped. The Otolaryngologist was able to cut out a ridge and a bit of granulation tissue, but said that the real issue seems to be that her stoma is very tight. In order to correct this, she would need to have a surgery to remove the tissue between her skin and her trachea, essentially it would be like getting a new trach again. It would require recovery in the PICU, ect. This is currently a “no” for both Ed and I.
However, the doctor is hopeful that if we monthly replace her trach with a brand new one (instead of sterilizing and reusing them multiple times) that we will be able to get it placed with less trauma. We won’t know until we try with a new trach next month. If this works, we would just need to present arguments to the insurance company for a new trach each month rather than a new one every 5 months.
I had hoped for a better resolution than this, but I am grateful to know what the problem is and so thankful to have brought Aimee home again. It was a long exhausting day and Aimee bled quite a bit, but she is with us.
Also, I met with the urologist this morning following up on her renal ultrasound. She has a lot of debris in her kidneys and a decent size stone in one. At the moment we will just monitor this and, as long as there are no symptoms, repeat the ultrasound in 6 months.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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