Four Months

It's been four great months of being home. Our family has gone on a number of mini vacations and we have just enjoyed playing the role of a non medical family. Well unfortunately that has come to an end as we sit in the ER (Avery settled in on bipap) and about to head to the unit in a bit. I'm not at all surprised by this admission because he has been struggling for the past week. Avery scared the heck out of us on Sunday with desats into the 50's. He has also not been producing much urine at all the past couple of days. Basically the fluids he has been getting have gone straight to his lungs. He is very wet sounds with crackles throughout his lungs. Not really sure why he is third spacing bc his labs actually look really good. What sent us running in here was a fever. When Avery gets a fever pretty much all bets are off and I need hall my butt to the hospital. I'm glad I went with my gut that was telling me he was going downhill fast as he had not even spiked on the monitor but his body was hot and he was breathing really fast. By the time we got to the ER he was high and we were immediately sent to the trauma room (never a good feeling) but was able to be moved bc respiratory knows him well and got him on bipap quickly.

So knowing Avery, he has some type of respiratory infection. I will take that over a line infection any day. Hopefully he gets on his typical antibiotics and gets healed and back home soon. I will say that after being away for four months and seeing so many mito kids die lately, it was scary to come in here. You never know when it's gonna be your time at the stage Avery is at with his disease. I do feel a little encouraged that his labs are not too bad and we caught him early. Guess we will see what he has in store for us!!!!!!