I was able to get discharged yesterday afternoon! So thankful! A friend from church, Julie, and her kiddos came and picked me up. Got home and got my Blue loves, and then my nurse came and re-accessed my port. Then we waited and waited and waited some more for my IV antibiotics to show up…I finally called at 9 and got the after hours team—sometimes the first delivery is super late but I had typically heard something by then. There was a mixup and somehow the order got to the company but not on to the pharmacy. I talked to the pharmacist and they said they’d have to get it ready in the morning. Typically I call when I’m on my way home, but the case manager at the hospital said she called and talked to them so I didn’t call. I called a little bit ago just to see timing of delivery this morning and got my normal pharmacist and no one had passed the message along to him. Welcome to the life of a professional patient lol. It’s frustrating but at the same time, God is over it all and allowing it to happen for a reason and a purpose. It’s not ideal since I learned that my pseudomonas is intermediately resistant to this antibiotic and the one I was on last time. The only antibiotic it’s sensitive to is one that caused nerve hearing loss so I can’t take it.
Please pray for my meds to get here and that they would work better than expected. I’m going to be asking my doc what “feeling better” looks like now that it’s more resistant and may not work as well….definitely wading in new territory that is to be expected with PCD being a progressive disease, but now that I’m here can be a little scary if I really stop and think about it. Praise the Lord I have Jesus and can cling to Him, knowing that He knows every single cell in my body, the number of hairs on my head, and not only that, but nothing comes to me that doesn’t first go through Him and is for my ultimate good and His ultimate glory.
I’m gonna sign off but wanted to update everyone!
In His Mighty Grip,
Rachelle
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