I have been trying to focus on the day by day- which has actually been both dramatic and positive the past few days. But Lily cannot do that. Lily wants to know when we are going home. "Soon," I am afraid has come to mean its opposite in her mind. Soon means not now and we don't know when. Soon meant days at first, but that was over a month ago. Then soon meant probably a few weeks, but it is week seven. (I think.) To a four year old who wants to go home, seven weeks is pretty much the opposite of soon. For all of us, really, but her especially. We want to go home.
"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access [by faith] to this grace in which we stand, and we boast in hope of the glory of God. Not only that, but we even boast of our afflictions, knowing that affliction produces endurance, and endurance, proven character, and proven character, hope, and hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us." Romans 5:1-5
We are on our way though. Truly. Soon. Soon relative to how long we have been here, not how long we thought we would be here.
There are medical things keeping us here. Her vent and her sedation meds. As of today, we are done with narcotics! (You are cheering, right!?) We have one more drug that has to come down before we can go home, but it is the easier non-narcotic one. Yay! From the perspective of sedation meds, she should be ready in a few days.
The vent settings are actually really low. She has done well on a number of "Cpap trials," which is very similar to the ERT trials we did before extubation. The machine does not give her any breaths, so she has to breath on her own. It is still giving some support though. It is giving some pressure and the air coming through the vent is not room air, it has a higher percentage of oxygen. She has done very well, but there is some concern that she does need that light support. So what is next? We have to determine if she needs it because there is damage to her lungs which will heal in time- but over quite a long time. Or maybe she needs it because her airway is "floppy" and so it closes of sometimes and causes her to inhale some secretions. Or she might need it simply because she has been heavily sedated, ill, and missing a lot of nutrition (for various reasons) over recent extended weeks. The real question is: will Sarah need ventilator support for a week or two more, or much longer? Or even more practically, will we be going home with a vent or not? If we need one, the process of getting one takes time between insurance, home inspection (making sure our electricity is safe and can handle it), and equipment supply. If we decide she does not need one, we will be transitioning to a "sub-acute facility" for a few weeks. I am rooting for whatever gets me home the fastest.
We will be home soon.