Thursday, April 15, 2010

Been a while, want to update everyone

To All:

It's been a while since I sent my last update, and people have been increasingly asking how Ethan is doing, so I wanted to update everyone.  It remains encouraging to have all of you take an active interest in our situation and to genuinely want to know what is going on.  There has been a lot going on since the last update, so in my traditional form, I will itemize the "big" points:

1.  Ethan had his gastric test, and the results were that his stomach digests food very slowly, which further supports the reflux aspiration theory.
2.  Ethan had an NJ feeding tube placed, which is a tube that goes into the nose and through the stomach into the intestine.  They want to see how well he absorbs food through his intestine and try and avoid the aspiration issue.
3.  On my watch, Ethan pulled out his NJ tube and had to have it re-done.  Every time he gets one, he has to go to radiology so they can video and watch where it's going to ensure that they get it in the right place.  Ethan doesn't like this process at all, and I felt bad.  
4.  He hasn't been doing great on the NJ tube -- he still refluxes quite a bit and they put him on a secondary medication (in addition to Prevacid) to try and get his stomach to digest faster.  He has also lost more weight several days this week, and slept all night Sunday night, all day Monday (except for 45 minutes) and all Monday night.  He was more active yesterday, but back to sleeping a lot today.  
5.  He is scheduled to undergo bronchoscopy #2 (and general anesthesia #4) on Friday at 12:30pm.  This will determine the level of aspiration still occurring with the NJ tube.  
6.  From there, a determination will be made about what to do.  If he is not aspirating with the NJ tube, it's likely that a "G" tube will be placed, which is a tube that is surgically implanted in his stomach area for long-term feeding.  If this is the case, it's likely that Ethan will not eat orally for 6-8 months, and will need therapy in the future to retrain him how to eat.  
7.  If he is still aspirating, a surgical procedure may be necessary.  We should have more clear answers as to the direction late Friday or Saturday.  

This Saturday will mark one month in the hospital for Ethan and mommy.  Remarkably, Robin is holding up unbelievably well and Ethan is the happiest patient ever to be seen at the hospital.  He almost never cries (except when undergoing a procedure), and waves and smiles at everyone all the time (when he's awake) -- his spirit is amazing.  This has been a long haul, but we have met many that have much longer stays and much harder situations.  There are a group of other parents and kids that we have become close with on the floor that are also "camping out" on Floor 3, and have served as encouragement and distraction during the day for Robin.  

If everything goes well, we may get out mid next week, but we've thought that a few times before!  We are on the one-day-at-a-time plan, so we'll have to wait and see.  The other boys are holding up well, but the effects are becoming more apparent, especially for the younger two, Nicholas and Andrew.  Andrew has become increasingly sensitive in the past few days, and has begun asking for his mommy and getting very tearful around bedtime.  The other night I asked him if he wanted a hug, and he said that he wanted his mommy and brother to be home again.  Nicholas shared the other day that he doesn't think that the doctors can fix Ethan, and if they could, they would have done it by now, and they're just kidding us into thinking they can help.  

It's my prayer that we can have Ethan on the mend and back home with Robin, and that our family can get some "normalcy" back -- whatever that might be for the Peterson clan!  I appreciate all of your continued prayers and support, I truly believe that they have served to protect Ethan and hold up Robin and our family during this time.  More than ever, we need the prayers!

Until the next update. . . . . .

God Bless, 


No comments:

Post a Comment