Hope had a quiet night and day. Last night they put her on CPAP from a recommendation of the pulmonologist. The thought was that with enough pressure they might be able to keep her airway open and make her more comfortable until a long term solution could be formulated. Well.... as we know from before, Hope DOES NOT like CPAP. She spent most of the night being very agitated and inconsolable. Her nurse, Beth, tried all night long to make her comfortable by rocking her, holding her, putting her in her boppy.... all to no avail. When Mommy & Daddy arrived this morning Hope was still upset. She was kicking and flailing and screaming, in typical girl fashion. Mommy & Daddy asked the doctors to put her back on vapotherm. Once she was back on vapotherm she fell sound asleep and slept most of the day, but do you blame her? Being upset all night is tough work!
Mommy & Daddy talked to the pulmonologist this afternoon. While no decisions have been officially made, it is starting to look more and more like a tracheostomy will be the best thing to help Hope be able to breathe. Tomorrow everyone is sitting down to go over things in more detail and look at a potential time frame for all of this.
That's major stuff. Praying hard for you right now.
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