Samuel Update

I wanted to update everyone about Samuel. He's been at the Hospital (the one I used to work at) in Indy all week. We got home today, here are the details:

Dear Friends, Family, and Loved Ones, Tracy has updated you earlier about Samuel's entrance in the hospital. We have so many of you to contact that we thought it best to send out this group email. If you have questions, feel free to email us. Just know our access to email is limited, so we may not be able to get back to you immediately. For the couple of weeks, we've been working with Samuel regarding a couple conditions. First, it appears that he has tracheomalacia. Basically, this means his trachea is softer than usual and constricts when he breaths, making it a bit more difficult for him to take in air. The other condition is that he aspirates slightly when he eats. This means that he has a some difficulty cutting off his trachea when he eats and a small amount of fluid enters his breathing airway. Both of these conditions, which can be related to his low birthweight, They are manageable and children generally grow out of them. Samuel will probably do likewise. Unfortunately, the combination of these conditions has caused him problems. Since he aspirates when he breathes, he pulls fluid into his trachea that irratates it. This is exacerbated by the fact that he already has a trachea that restricts when he breathes. The irratation got bad enough that he started to have coughing fits, which irritated his trachea even more. All this is exacerbated further by the fact that he spits up a lot, which means that after he eats, he could be irratating everything even more when he refluxes. Otherwise, he is a strong, healthy little boy who is right on track with his physical and mental development. He has good lungs, so he is managing to pull in a safe level of oxygen on his own and doesn't need a breathing tube or oxygen. But he has to work a lot harder to breathe and his feeding problems make it worse. In all, he has an inflamed trachea that needs to heal if he is going to breathe more easily. So we have decided to have him treated with an NJ tube. This is a feeding tube that runs from his nose, down his esophagus, through his stomach, to his small intestine. Since it enters through his nose, there is no need for surgery. The NJ tube will allow us to feed him without his needing to swallow. This in turn will eliminate for the time being any aspiration that occurs from swallowing. Since it goes down to his small intestine, it should also eliminate or greatly reduce spit up, so that his reflux will also no longer irritate his trachea. All this is intended to give his trachea a rest and allow it to heal. Hopefully--and with the aid of good doctors, God's help, and your prayers--we'll be able to remove the NJ tube in a few weeks and find a regular feeding regime that will prevent the aspiration. So many of you have sent us words of encouragement. We appreciate it. Continue to remember us in your thoughts and prayers as we manage this difficult but surmountable challenge with Samuel's health.


My post about the hospitalization:

TheDrs decided to place a feeding tube through his nose in order to helpwith healing his airways. He has had so much trouble with spitting,trying to swallow and aspiration, so the drs decided it would be bestto give him body a break, make sure he gets calories etc. I'm a bithesitant about this whole thing--I've to often seen NJ tubes be thestart of other issues and I'm always for "comfort" rather than"aggressive medical care"...I'm hoping this is indeed what needed tobe done.It's VERY frustrating to be on the "other side" as a pt advocate.Even being someplace I trust, it feels like I'm the last to know andreally don't have a clear idea of the plan, etc. After some"aggressive mommy communication" with the Dr today, I feel I have abetter sense of our goals etc. I feel much more sympathy for pts andtheir families--very helping learnings. We'll see how things go.
I appreciate all your prayers, text msg, and calls. I'm sorry I can'tget back to all of you who did call, but it's still appreciated. I'msending these updates as a way to keep you all informed.Very tired--