After looking absolutely fabulous for a day or two, we were tentatively planning on going home today. Unfortunately, compared to yesterday, John’s breathing is more labored, faster, and his HR is high. This is his normal trajectory, which is why around 3 days after discharge we have to keep returning to the ER. Fortunately, the doctor decided to keep him for a few extra days to monitor him so we are more promptly getting what we need to get back to a better spot. 

Since the actual problem cannot be quickly fixed, we are constantly working to find ways to support him while we wait for time to pass. Systemic steroids have been extremely effective for John in the short term. Because of his age, steroids come with the risk of long-term adrenal gland dysfunction so they have to be used in moderation. Doctors are currently working to devise a plan to keep him on the steroids safely for more than a day at a time. 

Another thing we are doing to support him is take some of the workload off. Between fighting to breathe and working tirelessly to drink from a bottle, John’s weight gain has been abysmal. Once we go home, his feeding tube will stay in so that he can continue to get all of his calories without having to work for them. This should help improve his weight gain and his respiratory state. The swallow study today will determine if he’s aspirating/refluxing or not and will guide some decisions moving forward. 
They have also gotten us setup with some home oxygen to help give him a little support when he needs it. 

As parents, we’re constantly stuck between wanting him home, but also being thankful that he’s where he needs to be and is getting the help he needs. This process continues to be exhausting, as many told us it would be, and the light at the end of the tunnel seems so far away. We are eternally thankful for everyone who is helping to lighten the load in every way and hold onto the hope that one day this will all be just a memory.