10.14.21 ICU 23

Good news, the severe nystagmus and clonic jerks Aimee is having are not seizures. I haven’t talked to Neurology yet, but at least we won’t have to increase seizure meds. 

We met an endocrine doctor this afternoon. She ordered a bunch of blood draws to check hormone levels and nutrition levels. We will meet with the skeletal health clinic once Aimee is stable to talk about bone infusion therapies, but for now there may be some hormone support or supplement support that we can give to help her heal the current fracture. Along with that we will have to be very careful from now on when we do her care to not put stress on her bones particularly during transfers, positioning, stretching, and blood draws/IV attempts. I still can’t believe that her femur is fractured. 

Tonight the nurse did a new CBC and Aimee’s hematocrit and hemoglobin are both decreasing again after a few days with slightly improving levels. She has been very anemic the whole time we’ve been here, but it is disappointing to be going backwards in her different blood test results today. They are preparing to give her a unit of blood right now. 

Overall Aimee is having a calm evening with no increase in respiratory support needed. She has had a couple of mucous plugs today, but once those were cleared she has been doing well respiratory wise.  

Tomorrow I get to see the younger 4 kids for the first time in 2 weeks. 💛 Looking forward to leaving the hospital for a night and snuggling them all, but also heartbroken to leave Aimee and Ed here. This is going to be a long, tough road. 

Speaking of which, a few people have asked how they can help us. It is hard to think on the spot, so I haven’t answered well. Ed and I sat down tonight and thought about what would help. Thank you to each of you who have already blessed us in different ways. Here are some ideas that would be so appreciated:

-Costco gift cards for gas and for prepared meals

-Hospital room service gift cards

-Starbucks gift cards

-Activities or cards in the mail for the younger kids

-Messages to me or phone calls to Ed to let us know you remember us  

-Audio messages to Aimee that we can play for her to hear

-Prayer for each member of our family. This has been a hard 5 months and there is much more to come. It is very difficult on each of us in different ways. 


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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)

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