I don't know... tonight is just rough. I am having a hard time at the moment with where Ali is regarding her medical status. She is struggling so much. I just... my heart is breaking for her. I am so frustrated. I just want to rush down to the hospital and scoop her up and just hold her.
She had her tracheostomy on February 16th. She has been in so much pain since then. She has been struggling to hold her sats, keep her co2 levels down and now the stupid trach is not even the right one. She had the initial one changed yesterday (Feb 23rd) and in the past two days had two more placed, trying to find the right fit. Scott said the Pulmonologist came in and was very upset at the ENT as they chose to place a pediatric sized trach. FINALLY they have realized she needs a customized trach. The way Ali is, EVERYTHING should just be customized. They should know that if it can go wrong with her, most likely it will go wrong. She is very touchy, very specific, very everything. That is just her.
Lord, help me. Help my heart. Help me to focus. Help me to hold on to you. Onto your promises. Help me to continue to lay my daughter at your feet daily; sometimes hourly. I just hurt so much knowing what she is going thru. The stress is too much at times. I know thru you, I can do all things, but I am scared. I love Ali so much and just want her home, in my arms, as my daughter.
What started out to be a place to dump all of my worries related to our daughter Alicen is now a place about our family. Our life is crazy but it's what we know. Thankfully, we know Jesus Christ is in it all!
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