Tracheostomy

We met with Chase's doctor today, Dr. Polatto . They're recommending a tracheostomy, which is a surgical opening of the trachea at the neck. We had been kind of warned that this might be coming, but were hopeful it could be avoided. With his continual desats, it's really the best option for him. And based on the CT scan, his nasal passage is too small for him to be able to breathe through his nose. The plastic surgery team saw him, and there is surgical reconstruction and/or some interventions that can be done to his nose, but he's not big enough yet. So the trach would be until he's ready for the surgery, which could be months or years. We have alot of questions for the Eear Nose Throat (ENT) doctors. And we want to make sure everything else has been tried already before we elect for the trach. It's a scary thing, but we want what's best for Chase. We're really nervous about taking care of him with a trach. I guess it has to be cleaned twice a day, and changed twice a week, both of which takes two people. There's an increased risk of infection and pneumonia, and it just looks so uncomfortable. We went to see a little 6 month old girl with a trach so we could see how they clean it and what it looks like. Chris is really uneasy about the whole thing. If Chase gets the trach, he could potentially come home 2-3 weeks later if he's feeding okay and everything else is stable. And I guess that's our ultimate goal for now. I look out onto the Trolley Trail and see moms and dads pushing their babies in strollers and wagons, and wish for that so much!! Chase's red stroller is ready and waiting for him :)

I spoke with a genetic counselor today about Chase's condition, Chondrodysplasia Punctata (CDP). They're running a couple more tests to try to determine the type, but it sounds like the more severe forms have been ruled out. This was so reassuring to hear. It would be awesome if, once his airway/respiratory issues get fixed, he can live carefree like most little boys, without concerns of seizures, cataracts, or the other things associated with CDP. But I guess this is where faith comes in once again and trust in God's will for Chase.

Here are lyrics from one of my favorite Christian songs Take My Hand from a group KRY. This song has helped me through many tough times. Thanks to Jeanne for introducing me to it in college.

I know there are times, your dreams turn to dust, you wonder as you cry, why it has to hurt so much, give Me all your sadness, someday you will know the reason why, with a child-like heart simply put your hope in Me. Take My hand and walk where I lead, keep your eyes on Me alone, don't you say why were the old days better just because you're scared of the unknown, take My hand and walk. Don't live in the past cause yesterday's gone, wishing memories would last, you're afraid to carry on, you don't know what's comin', but you know the One who holds tomorrow, I will be your guide, take you through the night if you keep your eyes on Me. Take my hand and walk where I lead, Keep your eyes on me alone don't you say why were the old days better just because you're scared of the unknown, take my hand and walk where I lead, you will never be alone, faith is to be sure of what you hope for and the evidence of things unseen. So take my hand and walk, Just like a child holding daddy's hand don't let go of mine you know you can't stand on your own.