It was a reassurance of Meg being strong in her lungs that I needed. The best part is she stayed off the vent for a total of 22 hours and did great. I had to put her back on last night to sleep because I could not keep my eyes open to watch her. It was a safety issue. I need to be able to respond and suction and I certainly could not do that with toothpicks in my eyelids.
We went to see a new ENT during this and he was awesome. Wish I would have seen him 2 1/2 years ago. So smart!!!!! Worries about the whole child and knows so much about diseases, diet, allergies - you name it. He was kind and very willing to spend as much time as he or we needed to figure things out. He assessed Meg's tonsils and said that it is viral, HSV virus living in the tonsils most likely and they need to come out. The tonsils started July 17th - it is September already. October 7th is the day and I cant wait. I have thought this since she was less than a year old getting tonsil infections every month to the day - exactly. As far as the vent/trach stuff he said he thinks she does not need either for much longer and he told me that she was fighting the vent with her natural breathing pattern and pushing the mucous out the nose and mouth. Another way that I was reassured.
I thanked God for giving me the signs I was so desperately in need of.
Alas, everything cant end good - just g0t a phone call with some more denial for nursing. Although we were approached by Hospice Palliative Care from the article in the paper about offering some nursing overnight shifts for Megan, they assessed her this morning for about 3 hours here and had a meeting about it after and it was decided that she does not qualify after all because of the vent. A vent is a life prolonging device and hospice is geared to comfort care and quality of life for life limiting diseases, not for qualify of life if any machinery is used other than feeding tubes, BIPAP ,CPAP - even if she is weaning off and the future looks to hold no vent for her. When the vent is gone, we can reapply. Good effort...another crack we fall into. We must be the CRACK family!!!!
Am I disappointed to know sleep is not in the future? Yes, but there is nothing I can do about it today.