Friday, March 26, 2010

"When my world is shaking, heaven stands." - JJ Heller ("Your Hands")

To All:

We have received support over the past week that is unmeasurable in any way at all -- through giving, meals, prayer, calls, email, helping with our other boys, etc. . . . I don't even know how to show how truly thankful we are, and a simple thank you isn't nearly enough.  Yet all I can do right now is say thank you, and we hope that we have the privilege to serve in the future as we are being served now.  It's comforting to know that our roots to family and friends are deep.

With that said, we actually have some news.  It has been a long week, and Ethan has been poked and prodded in every way imaginable.  We have discovered that he is a durable little guy and has won the hearts of the nursing staff with his attitude.  So here's the rundown:

1.  Ethan didn't tolerate the feeding well and yesterday (Thursday) morning, they took him off of feeding through the feeding tube and put him on full IV.  
2.  Yesterday afternoon, he went under general anesthesia and had a GI scope and biopsies done.  He didn't come out of that too happy and cried for about 3 hours.  Luckily Pastor Billy and Phil Hunter were there to pray for him when he calmed down.
3.  Also yesterday, his sweat test for cystic fibrosis came back negative, which was great news.
4.  Last night, they put him back on a slow drip for feeding through the night.
5.  He made it through the night on the feed drip, which was encouraging, but by mid-morning was throwing up again.
6.  Tonight (Friday), the speech therapist came in to work on his mouth feeding which went really well, although he really didn't take much food, he showed her that he does have age-appropriate eating skills.
7.  And finally tonight, the biopsies came back around 5:30pm.  They came back normal with no allergies, but did show signs of an acute intestinal virus.

So with the news of a possible virus, we are now on "contact isolation" which means baby is confined to his room and can no longer walk the halls and look out the windows with mommy and daddy.  For those of you who have seen the room, it's a tight space to be confined to.  The nursing staff will also now come in fully garbed with masks and all.

The doctors don't seem convinced that the virus is the answer, but the combination of the RSV, ear infections, pulmonary aspiration, and intestinal virus have all added up.  Because he hasn't gained weight since four months, the doctors think there may be something else as well.  There is still an issue with his urination, and he has been taken off of the IV tonight to see how he does.  If that remains a problem, we'll work on that next.  

We are waiting for Ethan to go "number 2" so they can analyze the stool sample for the virus, which could take up to ten days to fully analyze.  Ethan doesn't like to go "number 2" and may not do so for several days, so the clock won't start until he does.  

If we can get him retaining food through the feeding tube (which I've learned how to place through the nose -- not fun for either of us!) and urinating regularly, as well as gaining weight, he may be able to come home for outpatient care.  If we can't, metabolic testing is next. . . . 

So in summary, though we have some (possible) answers, we still have many questions.  We are hoping for weight gain without the IV's in, that he holds his tube feedings down, and that he goes number 1 regularly and number 2 soon.  We want him home, but we also want to try and avoid coming back, so we want to balance getting him home with getting him stabilized.

Thank you all for being so concerned and caring so much.

God Bless, 

and Robin, Jacob, Nicholas, Andrew and Ethan

No comments:

Post a Comment