Lennyn FINALLY has her tube out. She’s still pretty sore from surgery but so much happier without her vent. Shes back to a cannula at 2 liters of flow at 21 percent. She’s 8 pounds and 1 ounces. We’re waiting for a little bit of weight loss due to fluids but that hasn’t happened yet. We tried bottle feeding 2 times today. She took 30 of 60 on the first bottle and 20 of 60 on the 2nd. The results to her MRI are in and her ventricles still look smaller but there is noticeable white matter loss 😞. It’s a waiting game to see what impairments this causes but white matter controls all your motor functions and damage to or loss of this is brain damage.
Today I’m really feeling the toll of only being one person and constantly being pulled in 800 directions. I had a 24 hour blood pressure cuff yesterday and was to return to my nephrologist next week to go over results. I got a phone call 2 hours after I returned the equipment because my pressures are consistently 170s/100s and only dropping to 140s/90s when I’m sleeping. I only have insurance for 20 more days and then will lapse until open enrollment at work. Trying to squeeze in CT’s, ultrasounds, and blood work to make sure my stents are open and there is not further stenosis is challenging with two girls to attend to in two different counties. Im having a bunch of other symptoms related to other issues and I just don’t feel good. I’m racing against the clock to try to get this under control and diagnosed before my insurance is canceled. I’m tired, I’m frustrated, and I’m emotional about the events that lead up to Lennyn’s last 6 weeks and growing brain damage that is becoming more apparent because of it all. It’s normal to have one day to just be down and not super strong right? Just want to feel better and just went my baby home. Day 46 and I’m feeling it.
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