Alexia’s Journey

Today was rough. It began at 130 this morning when our warrior princess woke unable to sleep due to coughing and congestion. Medical mama’s know that the “sick protocol” is no joke and take it seriously- one “junkie” chest day and it begins.. the battle against pneumonia. For neuromuscular disease, we’re learning that lungs are touchy and should be monitored closely. We had our first bout of pneumonia almost a year ago – one day in the hospital and lessons learned. We were schooled in both “maintenance” and “sick” protocol- which we follow carefully. In the last six weeks she’s had COVID, and influenza both, but either the combo of them or a third culprit got her with pneumonia today. 😦 She was miserable and we were scared. Tonight she sleeps in the PICU on bipap oxygen, after high dose antibiotics and fluids galore- to say today was tough would be a serious understatement .. Tomorrow WILL be a better day. ❤️🙏🏼