I seriously cannot remember the start of a school year kicking our butt as badly as this year has. Not sure where to even go with all this, but after numerous doctor appointments that led to even more doctor appointments along with a trip to the emergency room via an ambulance ride...our girl is now on home oxygen. Not a place I ever wanted to go with her but here we are. Mine and Chad's room has been converted into mine and Sophie's room and it looks like a makeshift hospital room. We have a pulse oximeter because our girl likes to hang out around 85-90% instead of 95-100%. She is on oxygen via nasal cannula. We have her suction machine plugged in nearby and then her ever present IV pole that holds her feeding pump. You can't imagine the tubes, wires and lines that are involved. My arms cannot possibly carry it all as I find myself weighed down moving as much of her equipment as possible from the family room to our room when it is time for her to go to bed...weighed down both physically and emotionally.
I've done little more than go to hospitals, appointments, give meds and take care of our girl. Her cares are consuming a lot of time right now. We have so much equipment that our family room is overwhelmed by it. There is no looking at her without seeing something different. She's surrounded by so much stuff now that it's hard to even get to her. She is wearing her nasal cannula all the time at home due to her need for oxygen. It's hard not see the changes, it's even harder not to feel them...it hurts, it hurts my heart. I cannot help but think that things have changed. I can feel the shift inside these walls and I don't like where things are going. The boys can tell there's something different going on as well. We are getting questions like "What is that on Sophie's face?" and "Why does she need all this stuff?" They can tell that things have changed, she weighs on their minds too, in ways I can't understand...in ways only an older brother can.
I miss my husband being in our bed and you can take that any way you want to but I don't mean it in a way that's TMI (too much information). I mean I miss my husband and talking to him before we fall asleep and waking up next to him each morning. Our connection and commitment is strong enough to weather this and I am thankful that he knows when she needs me more than he does and he selflessly gives up his spot in our bed to her. I want him back in our bed though because it means things are "normal" again in our house and that she's well enough to be back in her own bed.
I don't know how long this is going to last this time but I know things are different. She is different than she was a month ago, we know new things about her health that has altered we way we care for her. Our house is busting with medical equipment, it feels like there's no room left and no way to get to our girl. Pray for us as we're trying to figure out this new road.