I hope everyone had a healthy and happy 4th of July!
Kayla has still been sick since she came home from the Hospital on June 5th. We did a trach culture about 2 weeks ago and she ended up growing pseudomonas, which is a type of infection. We took her off of the antibiotic that she was on and started her on an inhaled antibiotic, tobi nebs, which work well for that type of infection.
Kayla has been needing anywhere from 1 to 2.5 liters of oxygen regularly the whole month, which is a lot for her. She usually doesn't need any unless she is sick. Yesterday was the first day that she didn't need any, but she is back on it today. She also has a lot of secretions and is requiring a lot of suctioning. We are doing regular neb treatments for that. She has also had a lot of diarrhea from the last antibiotic, which is starting to go away a little bit. That's not fun for any of us!
Kayla has been really happy though. She's being a total goofball today, laughing at everything. She laughed so hard in her bath, that she turned blue. Sometimes she forgets to breathe when she laughs or crys.
Stephen and I went to the UMDF conference last weekend and it was really good. We met up with some families that I talk to on-line, which is nice and there were many informative sessions. My Genetic Dr. and the neurologist that I will be seeing were there and they did some sessions.
Kayla sends her love to everyone visitng her site!
