The good, the bad

About two weeks after Addy was decannulated, Chuck lost his job. This was major since he carried Addy's insurance, not to mention the loss of income. Luckily, my former employer allowed me to come back as a temp. I didn't want to go. I am not ready to me away from Addy yet. I did enjoy the social interaction, but my heart was at home with Addy. About 2 weeks after I went back to work, Chuck received a really good offer from an IT Consulting firm. He is beyond happy with his new gig and we are happy for him. The good news is that Addy now has long term care, which makes no sense, but I will take it! My semester is over. I got 3 A's and a B. I am pretty satisified. Hopefully in the next few weeks, I will apply to the nursing program. I am pretty stoked.

The kids are out of school and we have adjusted to being a trachless family again. Her equipment is in the garage with the exception of her pulse-ox. We are still using it at her ENT's request, but hope to stop using it by the time she sees him again next month. Addy is talking a little. She calls the dog "Da" and babbles a bit. I am working on getting her into speech therapy. She flunked her last swallow study, but I think we did it too soon after her decannulation.

The end of one chapter

Addisyn's trach Journey has come to an abrupt stop. We have been discussing decannulation with Addy's pulmonologist for quite some time. He saw her when she was sick a few months ago and ordered a chest x-ray. He was very happy with what he saw- a visible airway below the trach tube. The left main bronchus was still collapsing, however it will collapse with or without the trach. In other words, the trach was doing nothing for her. She no longer needed it. The next step was to get the ENT to agree. Her ENT is who placed the trach and is responsible for handling her tracheomalacia. He is more conservative and less likely to agree to decannulate. We saw him on Tuesday and he scheduled the bronch and trial decannulation. Now, fast forward to Friday- Trach Change day. I changed Addy's trach after her bath since her ties were wet. She has a lot of granulomas and I was unable to get the trach in. She was screaming, so I put the smaller trach in and called the ENT. They had me bring her to the hospital and were going to do a bronch and put the bigger trach back in. We received front of the line privelages in the ER. A while later I received a phone call from the ENT asking if I was willing to do a trial decannulation in the PICU instead. Hell Ya! Addy was admitted on Fri the 16th and a cap was placed on her trach forcing her to use her upper airway. She was capped over night with no problems and the ent came in at 11 to remove the trach. She stayed in the PICU another day to make sure she could handle being a nose-breather and was sent home on Sunday. We are slowly getting used to it. I haven't suctioned a trach since Friday night!