Monday, March 29, 2010

"Surely I have composed and quieted my soul; Like a weaned child rests against his mother, My soul is like a weaned child within me." - Psalm 131:2

To All:

As always, thank you for the outpouring of love and support -- it continues to be an absolute blessing.  This has been a much longer road than we had imagined it would be, and we're certainly not done yet.  When Ethan was admitted to the hospital, we were hoping to be in and out within five days with clear instructions on what to do and a definitive diagnosis.  Then we set our sights to be out by this past weekend.  Now, I think Easter weekend is the next realistic goal.  The lack of diagnosis combined with the absence of a discharge date has made the whole process very tense, but thanks to all of you, it has been much easier.  I can't imagine going through all of this with no place to turn, and it seems like half the world is praying and helping at this point!

So I need to backtrack a bit to the last update.  When I sent the email, it was my understanding from the doctors that they discovered an intestinal virus that may have been partially to blame for his problems.  The next day I found out this wasn't the case.  The intestinal virus was almost certainly "caught" in the hospital, and only added to his problems, but didn't help answer why we admitted him in the first place, it just complicated matters.  With that said, here's the bullet points:

1.  Since early last week, Ethan has been throwing up every day and night.  They couldn't take him off of his food, so he would constantly get a slow drip day and night, and constantly throw it up.  They believe the sickness was caused by the virus, and we were going to need to let the virus take it's course until they could get back to analyzing his situation.  
2.  Ethan stopped vomiting yesterday morning, and has been on a slow feeding tube drip all yesterday, last night and today.  Even when holding his food down, Ethan lost more weight at today's weigh-in.  
3.  With the GI workup primarily complete and problems persisting, it looks like we're on to the next step.
4.  It is likely that tomorrow we will go under the care of a pediatric metabolic/genetic specialist to determine if he has a metabolic issue processing nutrients from the food he eats.
5.  Ethan is very lethargic at this point, and sleeps almost all of the time.  When he is awake, he still smiles, but is very limp and "noodle" like.  When I visit the hospital, we'll play for 20 minutes and then he'll sleep on me for two hours.  This is certainly not my experience of eight month old activity that I witnessed from his older brothers and it's hard to see him so weak.  
6.  We have been moderately encouraged by another mother on the floor that Robin has been talking to.  When she described her boy (losing weight, lethargic, always liked to sleep, gained weight at first and then stopped, etc. . .), it sounded like she was talking about Ethan.  That boy was diagnosed with a metabolic disorder, so we hope that we too can get some definitive answers.  We also got the mother's name and number for information and support.
7.  They have asked for the results of the stool sample to be expedited, and we should have the whole set back tomorrow.  Rotavirus has been excluded, so we'll see what comes up.  If they can nail the virus down and determine if it's gone, he can come off of contact isolation and be free to look out the windows and sit in his favorite hall seat with mommy and daddy again.  
8.  Robin continues to "hold down the fort" at the hospital with only minimal relief from me (she went out to dinner with the other boys twice and that's the only time she's left the hospital in 10 days).  She continues to be an absolute rock, and I can only attribute that to the Lord.  

So that's where we are for now.  I'm sorry if the updates are too long, but I have to admit that there is a bit of therapy in typing these.  It helps put my thoughts in order as well.  Thank you to all who pray, help, visit, read the updates, bring meals, help pick up the other boys from school, watch the boys, etc. -- we couldn't do it without you.  

God Bless, 

Matt, Robin, Jacob, Nicholas, Andrew and Ethan

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