Well, I am finally setting up a blog. I have been wanting to do this for a while now, I have just never been able to find the time. Imagine that! I will try to keep it updated with pictures and videos as best I can.
Marissa is doing well. She is going to get ear tubes on August 8th because she has had 4 ear infections, 3 in the last two months! The doctor will test her hearing and scope her airway all at the same time. We are hopeful her airway will look good enough for the doctor to allow us to downsize the trach and start capping. Downsizing the trach would allow more air to go around the trach tube and if she tolerates capping, we could decannulate her soon (take the trach out)! She would start with a sleep study and if she tolerates her trach being capped during that, we could cap 24/7 for probably at least a month. We are hopeful she would be a good candidate for this because she has been plugging her trach with her thumb for many months. She plugs it when she breathes out and then takes her finger out when she needs to breathe in. Just recently, she had not been taking her thumb out when she breathed in. She was breathing in and out around the tube through her mouth and nose full time for about 45-60 seconds at a time!! She also is tolerating her speaking valve (PMV) all day and is making huge sounds around the trach when she doesn't have the PMV on!! Let's just say we are cautiously optimistic. Jeremy and I are fully aware of how things typically run in this household. Murphy's Law rules!!