Mattie has had a difficult few weeks since my last update. He has continued to have spells where his oxygen levels and heart rate drop, resulting in the need for increased support. Our medical team has tried numerous treatments that have given temporary relief from these spells, but have not “fixed” the issues. We have looked at so many possible causes of these spells, hoping for an easy resolution. No answers have come.
After our 2nd Care Conference (which was on Tuesday afternoon), we agreed that the best way to get to the bottom of this was to have Mattie get a bronchogram. A bronchogram is a scope of the upper and lower airway that is done when the patient is awake. Today they intubated Mattie for the bronchogram, and then allowed him to be agitated in order to see what was happening in his airway under video camera. What the test showed is that his upper airway is collapsing when he has these spells, but in addition there is collapse in the lower airway as well.
After much prayer and a lot of talking to specialists, and friends who have had similar experiences with their children, we have decided that the best possible solution for Mattie is for him to have a tracheotomy. It breaks our hearts to see our son need such an extreme measure. It has been a heart wrenching decision. One no parent wants to be forced to make, but we feel it is in Mattie’s best interest and will give him a much improved quality of life.
Not only is Mattie needing a tracheotomy, he will need to be on a ventilator in order to keep proper pressure on his airways allowing them to stay open and function without stress. I will be sharing much more about this in the days and weeks to come. (For those of you with experience with ventilators, Mattie’s lungs are currently requiring a peep of 10 in order to stay open.)
Having a trach will allow us to get Mattie home. Home with his family. Home, surrounded by love. Home will look very different. We will be literally moving an ICU into our home. This will require some major home renovations and a lot of preparation in the weeks to come. We anticipate it to be at least a 6-8 week process, possibly 2 months. We have a lot to learn, and a lot to prepare for.
Tomorrow is Mattie’s tracheotomy, if all goes as planned. He has remained intubated and is being sedated this evening until surgery.
I will write more later. Tonight, the facts. More from my heart later. Tonight words fail me.