Hope

-Chase handing me his right hearing aid.


-Worn out


-Super Chase






Chase saw his physician Dr. Gratny today, along with the ENT (ear/nose/throat) doctor who is partners with the ENT, Dr. Nichlaus, who did Chase's tracheotomy in June. Much to our surprise, she feels that because he isn't requiring any extra oxygen, he's not on a ventilator, and his nasal passage is open (it's just very small), that Chase would possibly be a candidate for a surgery where they go in and open his nasal passage. This would hopefully allow him to breathe well enough through his nose to where he wouldn't need the trach anymore. Yay! She did say that sometimes she and her partners have differing opinions, and that she would need to talk to Dr. Nichlaus who will then contact us if she thinks this is a good idea. It wouldn't happen until April/May/June, if it happens at all. Of course I always think of questions after I get home that I wish I had asked, like why wasn't this option ever discussed before today. We saw a plastic surgeon early on, even before Chase received the trach, who evaluated him for reconstructive surgery but said he didn't like to do this kind of surgery on kids less than 4 years old. This sounds like a different procedure though. The procedure that they talked about doing today sounds fairly minor in comparison and would only require an over night hospital stay, maybe two. So we'll see....more to come on that. But we're hopeful it happens, and works, and allows Chase to be trach-free!!

"Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all." ~Emily Dickinson

Chase is up to 12 lbs 13 oz. The doctor said as long as he's gaining weight, she's happy. She'd prefer he gain 15-20 grams/day instead of his 10 grams. It's been a bit of a struggle with nurse Cathy to give him enough volume during the day, so the doctor wrote specific orders to give him between 500-600 mls during her shift. Hopefully this helps. On a quick side note, we are supposed to meet with another potential nurse this week to see if they are a better fit, and we know better now what we're looking for and what specific questions to ask.
Chase also met with an Occupational Therapist today at Children's. He continues to take about 75% of his bottle, then we give the rest via g-tube. Sometimes he'll take the entire bottle, and sometimes he won't want anything to do with it. She gave us a couple different nipples to try. I just wish we could get rid of one thing, whether it be the trach or g-tube.
Chase is rolling all over the place, cutting his first bottom tooth, and getting stronger and stronger by the day. He still isn’t sitting up on his own, but we’re getting there. His personality continues to make us laugh. He’s always making funny faces. At night when we hook him up to his monitor and humidified air trach mask, he’ll hold the trach mask out in front of him to try to un-snap it. He’ll get this look of complete concentration and determination. Later when we go into check on him, he’s often successful in his task and the mask is lying off to the side. But by this time, he’s usually asleep enough to put it back on without him knowing. He still pulls out his right hearing aid and now hands it to us. We asked about switching back to the shorter trach now that he’s bigger and can move his head around. With him grabbing everything, we’re afraid he’ll pull his trach out. But he’s still got enough chin chub that they think it might get in the way of the shorter trach.
Chris and I finally feel like we’re in a good routine with parenting, working, and even having occasional date nights.