(aka Mama’s Panic Attack)
I am trying to just keep breathing over here. We have made a huge step. Bella’s GI doctor felt that she did well enough with a couple of hours of G-tube feedings to try and push her a little. So the amount she would have gotten in four hours, she is getting in three, effective yesterday. And on top of that her color is all off today.
Nurse called out today. Let me just say that I am grateful we live in Texas. I am grateful that Bella has Medicaid, hence she has almost 24/7 nursing. There is a lot going on with the Federal Budget and Medicaid is in the spotlight. So far, Bella hasn’t been touched. And for that I am grateful. My friend Lacey has no nursing with her son Jax , and it kills me. When I am tired and think about feeling sorry for myself, I think of her and realize how blessed we are.
back to Bella…so with no nurse, it’s me doing everything today. And I’m watching this little monkey play and get all of her cords messed up like a big plate of spaghetti – and I am happy, and I am scared. She’s going to be fine, I tell myself. And then I go and review the signs of aspiration, as if I didn’t have them all memorized, just in case I might have missed something. Because we have been down this path before and it almost killed her. I have been playing out in my mind the worst case scenario – which ambulance company to call or just to call 911, who should pick up the kids after school? What about sister’s activity at church tonight? Who will watch them tomorrow? And the day after that? And the day after that? When to call Jason. Everything. Too bad my imagination is so good. My heart starts pounding. The adrenaline starts flowing. I start thinking about conversations with doctors. So now I am trying to stop myself. She is not the same girl she was. She is stronger. She is amazing. She loves life. She wants to live. She shows me that everyday. She is going to be fine.
Thank you for leading the way Bella. You are amazing!
Its so hard when we've seen our kids so sick, its hard to make changes like that. Makes you so nervous! But I do agree that Bella is much bigger and stronger. She will show us the way. Im really hopeful that Jax will get the waiver when we move, and hopefully get even a little nursing help!
She is truly amazing.Strong and resilient and letting everyone know she is capable of all these wonderful steps forward.Slow and Steady and leading the way!
She is awesome! She is such a different girl now, she is strong and such a fighter! You are her mommy and you know exactly what to do when! Trust yourself :)
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