Today was a hard day but thankfully we are still moving forward. We went to Lung Center and after ENT saying that we would definitely be decannulated this summer, Ava's doctor said that it might not be until November. This was quite shocking and I broke down into tears. Not because I "must" have Ava be without a trach, but rather because of our lack of nurses as well as the daily judgements I receive from the ones we have. We are quite often without night nurses and we are told this hours before that's the case. Or make that even minutes before they are to be at our house.
The doctor did decide to have Ava tested over night on Wednesday night to see if she could go off the vent for 6 hours (half the night). If she does well, we will be able to keep her off those six hours. He did say that if everything goes well, we should be off the vent by mid-July. They also would like to get a blood gas to see how her CO2 levels are.
Thanking God for Ava being off the vent and praying for relief and her to be vent and trach-free...
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