Amazing Madelyn Grace: I’m running out of title ideas because it’s been 24 days at this hospital.

Sunday funday! (As fun as a Sunday on your 24th consecutive day in the hospital can be.) Here’s what went on today:

Mad was doing well on spontaneous breathing all night until around 4:30 a.m. when she became very anxious. They turned spontaneous back on around 7:30 a.m. and went back and forth between four hours off and two hours on the vent. She is also almost completely off of her Precedex drip.

She still has quite a bit of delerium, but has her moments where she knows things. She could answer questions like what her name is and her birthday but still thinks it’s 2022 but that’s to be expected. They took blood to check her CO2 levels this afternoon to make sure the delirium isn’t from something else other than just being in the hospital for this long.

If her blood gases come back all clear, they will start a new weaning process called a trach collar. This device will blow oxygen over her trach rather than directly into her lungs forcing Madelyn breath air in all on her own.

Every day is a little bit of the same; she’s anxious for a bit and then she calms down and rests and then she gets worked up again. It’s especially hard with her delirium because we try and explain things to her but it’s just not computing right now. We know that one day the delirium will run its course and she will be able to comprehend everything, but everyday is just a lot of the same routine of clarity then confusion.

PT and OT came today and got her up and at ‘em. They really enjoy having a fun little dance party with her and getting her to shimmy. Part of me just KNOWS how embarrassed she is that these people are making her dance but I also like to think she enjoys it just a tad.

They changed her dressings on her hands and her fingers today, and everyone on the burn team says they’re healing well and looking good.

Today consisted of good moments and some tough moments just like any day, but we are just the most grateful for every small step forward. We send up prayers that will calm her anxieties and allow her lungs the ability to let Madelyn breath on her own!

Jeremiah 33:6 - Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.