Tuesday, June 23, 2009


Tomorrow, we need your thoughts and prayers... for our new family... but especially for Samuel. It's a big day for our little guy! His is working so hard to breathe... but he's crashing again, his lungs aren't healthy, and tomorrow we will try something new.

With his therapy barbell :)

During a bronchoscopy, they will look at his airway. If there is any obstruction, they will fix it! That would be fantastic! But, we don't anticipate there will be an obstruction. More than likely, Samuel will get a tracheostomy. Basically, the tracheostomy is when they make a hole in Samuel's trachea, through the front of his neck, and then insert a breathing tube. This is a great website that I found that explains it... http://www.tracheostomy.com/faq/what.htm.

If he gets it, the trache will be temporary - depending on his airway (they will check to see if it is "floppy") it sounds like we should expect a minimum of one year.

Why the trache?

- Samuel isn't getting better. He is working so hard, and we have tried so many things, but after a few weeks on each new treatment, he crashes. Right now they're doing everything they can to keep him off of the ventilator.

- The trache will help him to breathe easier! Samuel won't have to struggle so much! He's old enough now to know that he's uncomfortable and wants to be doing more than he's allowed to do with all of the breathing contraptions on his face.

- Right now, Samuel's CO2 levels in his blood are extremely high. This is very dangerous. With the trache, his body can get the oxygen that it needs AND these CO2 levels should come down.

- Neurologically, Samuel looks amazing!! He is bright-eyed and bushy-tailed! He loves to read, and look around, and interact with people! This is incredible, especially for a baby who not only started so small, but has spent his first five months in the hospital. To keep him going in the right direction, he needs to come home! He needs the interaction and stimulation that he will get from being with his family. Also, a lot of a baby's development comes from oral stimulation and with all of the stuff on his face he can't get that. With the trache, he can nurse and bottle-feed!

- He will be able to come HOME soon! Without the trache, it could be months and months... and he would probably still need it. With the trache, it could be a matter of weeks!

Why not to do the trache?

- I am terrified. It's pretty simple. I am so scared. I'm not sure why... the doctors, ENT folks, pulmonologist, respiratory therapists, and nurses are all on the same page... this is the best thing for Samuel. I know this is the right thing... and I'm excited for Samuel to feel better... and I can't wait to see my baby's face without any tubes... but that doesn't make it any easier. It's surgery.

A bit of good news! Even if he does get the trache, most likely Samuel's lungs will grow to be healthy and strong! In other words, will still be able to play sports besides golf, bowling, or bocce :) Or sing, like the contestant on American Idol :) If he's interested of course :)

So... tomorrow at 3:30 the doctors will do the bronchoscopy. At 4pm they will decide whether or not to do the trache. We're still hoping for an airway obstruction that can just be fixed, DB is convinced it's just the jellybean he gave Samuel last week, but preparing ourselves for him to come out of the procedure with the trache. We're excited there is a new option... but we're scared that our little boy might be having another surgery. I pray a lot for God to prepare Samuel for His purpose... and for the strength to keep praying that prayer.

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