Hi everyone, a quick update on Jo's breathing struggles the past few nights/ days. Jo sounds very obstructed in his airway. It has been all muscular in terms of the sounds we are hearing. Air passing through the airway with "sagging muscles" happens to some of us when we snore. It's just that Jo's is so much harder to hear considering all he has been through. Fortunately he is in the right place and they can prescribe medications we could not get at home. He just received a breathing treatment and is resting peacefully, the labored breathing has stopped and he sounds great.
Yesterday at about 730pm we had a ridiculously scary episode. We returned from a short trip to the store to find a room full of 10 people (Drs , nurses, respiratory therapist) and a red light in the hallway. I'm not sure what had happened before we arrived but clearly it wasn't good.
The professionals at Mary Bridge were on top of it and he was in recovery mode by the time we were bedside. The cause turned out to be a reflux from his feeding back up into his airway, causing a coughing spasm. According to the nurses this is very common, but when it occurs it is important to recognize it and act immediately. The scary part is that we asked the Dr. what we would have done had we been home, her response, "you would have had to call 911". Terrifying, just terrifying to even think about.
The plan with Jo is to increase his "food" intake, into regular "meals" instead of a continuous flow of formula (shake via G tube). The idea would be to let the stomach work like normal, digesting a meal, resting, digesting a meal and so and so on. Jo has been taking it like a champ without a single problem until yesterday. The chest xray showed he aspirated a bit of fluid into the lungs (nothing major) and his blood test returned with nothing to worry about. The fluid in his lungs creates a problem for a period of time until it clears, he doesn't have a true pneumonia at this time.
Jo now has a "barky" cough that sounds horrible. It sounds like a child with Croup, which sounds like a dog bark. Jo has actually had a Croup as recently as last year. Typically it doesn't occur past age 11, but as usual, Jo is the exception! The Drs are incorporating Croup treatment into to his respiratory care and it seems to be working great. In addition we thing Jo is experiencing common summer allergies, so we are doing Flonase every 12 hours to clear his nose.
Please focus your prayers and thoughts on Jo's breathing. Everything we are seeing is "normal" but it is very difficult to watch and leads us back to "helpless mode". We need everyone's strength to stay strong, and support Jo when he struggles. This is just another trial that we will pass together, but it sucks. Jo continues to fight hard, one miracle at a time, Thank you all for all of your love, positive thoughts, and prayers, they provide so much comfort for us.
Jojobinks, mommy and daddy are here. We hate to see you struggle, but we know you will get past this. Try to relax, and let the Lord continue to heal you, he has you and will not let you fall. I posted a picture in this blog from I found today from 5 years ago. You are soaring like an eagle and we know that someday you will soar again, please God please. We love you to the moon and back sweet angel, you've got this.