January 8, 2020 – Hope has had a great couple of days. She’s able to go to the lobby of the hospital & it’s still looking like we will be getting out Monday as long as her numbers are in line. ???? We had a little scare Thursday night. She had been getting this random red rash on her cheek, feet & back for a few days. Around 11? pm she looked at me & said “Mommy, I don’t feel good. I can’t breathe?” Her eyes absolutely were panicked & she was holding her chest! I went into Manic Mama Mode, I pressed the nurse button & ran to the hallway screaming “we need somebody NOW!!” Within 2 minutes, we had 6 or 7 nurses in the room. All her pressures etc were good. It was just a reaction from one of the anti-rejection medicine that they have since discontinued but it scared the crap out of me!! It has made me a little freaked out to leave the hospital but we also can’t wait to get a full night’s sleep with no interruptions (seriously do they really need to empty the trash at 3 am?!????????‍??) I went to the hotel we will be staying at on Friday & met the manager & his head of housekeeping. They couldn’t have been nicer or more understanding. ???? I’m spending some time with Grace this weekend while her dad takes watch. It’s only 2 weeks until her benefit. I’m planning on bringing her for an hour or two but that depends on how she’s doing. She’s excited but we need to make sure she’s not exposed to any germs. Does anyone know where I can rent a bubble to put her in? lol
Thank you again to everyone for all of your love!