Oropharyngea Dysphagia. Apparently that's the word for what Braven has been struggling for survival through since birth. It's why he turned blue choking so many times a day as a baby, why he pukes choking while singing, why we have pulled over on the freeway countless times to get him out of his carseat because he choked and can't breath (no food involved), why he's still in our bed at night so we can help him recover from aspirating in the night, why we find ourselves limiting his diet choices with Migraine attacke, carrying a LifeVac everywhere and struggling to get him back from total occlusions. Its also a very unhelpful diagnoses:

We are working right now to try to reduce the inflammation from the excess choking, aspiration and puking due to the cold Braven is recovering from, and have switched back to using vegan or goat milk only as a dairy source (including in baked goods etc) which was supportive for him as a baby.

We are also unable to feed him anything with solid consistencies that have the potential of hidden thin liquids such as pineapple, oranges, watermelon, popcycles, ice cream, jello, etc. Any juice, water, or liquid under a Level 2 (necter) consistency has to be thickened before he can have a drink.

Level 7 solids must be eaten in tiny bites with a liquid wash between bites to ensure a clean swallow. Anything that crumbles, like crackers, cereal etc. pose more risk of aspiration (during the feeding study he aspirated on a fish cracker) due to the unpredictability of pieces in the mouth and challenge creating a smooth glob of food to swallow down.
 
He chews amazing. We did SO much feeding therapy to get him this far, but the swallow and airway protection is out of his control and has inconsistencies and delays and full failures.   

Unfortunately, none of these precautions will actually stop the choking and aspiration because spit is a level 0 liquid and is the top thing he chokes and aspirates on. This means he requires constant, undistracted awareness and support, day and night for oral secretion aspiration managment. The only other thing we can really do to help keep him from developing a worsened lung infection or pneumonia from aspiration is strict oral hygiene (which he is amazing at!).

The hope with the diet restrictions is simply to reduce the amount of throat irritation and food related choking to that so that inflammation can reduce after the cold.

Unfortunately this whole hospitalization underscored (again) the reality of Braven's high risk around safely managing something as small as a cold, allergies, etc.

Braven has already been out of school for a month and that will continue until further meetings can happen with the district regarding medically necessary accomodations so he can access his education. This has been SO incredibly challenging on his mental health, and need for routine and consistency and has been heartbreaking and so frustrating for us as parents to navigate.

David and I can't find a good word to describe this exhaustion. Unless the other is home to take over we cannot take a nap if Braven is awake(he doesn't nap) (I am having to take a very expensive medication so my body literally cannot fall asleep if I am in charge of Braven) or even leave Braven in a room on his own.

During the night we are up multiple times adjusting his position, helping him recover from choking on his spit in his sleep, etc. While none of this is new, after 4 days in the hospital and just the added gut punch of depression and feeling like we can't catch a break from extreme situations, medical/financial insecurity, pure survival mode has us both nodding off playing with him and wishing we could support eachother but just beyond our max. Meals for us parents would be extremely helpful, anything to reduce the mental load. My Sister set up MealTrain for us (also available for sign up here under Meals). 

We are headed back to Seattle at 6am Tuesday morning for an intensive morning of evaluations.