Friday, April 16, 2010

The Saga Continues

"Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all." - Luke 18:17

To All:

There are never great days when you have a child in the hospital -- though some are better than others -- and the ups and downs of all of the strategies, mysteries, and problems leave a feeling that you've always just stepped off of a medical roller coaster ride.  So here I stand at the exit of another day of roller coaster rides. . . . 

Today, Ethan had his second bronchoscopy to snoop around and take samples to see if he is still aspirating food into his airways while being tube fed into his intestines and not his stomach (NJ tube).  Unfortunately, since the procedure was done on a Friday afternoon, it's likely that we won't get the results until Monday.  Even more discouraging is that last week his airways looked good other than the results that he had fluid, and this week his airways weren't looking so good.  The pulmonologist said that the passage-ways looked inflamed and irritated, and they are testing for both fluids as well as viruses.  

In concert with the aspiration issues, the doctors have become increasingly concerned about how lethargic Ethan is as well as his lack of muscle tone.  What this means for Ethan is two things:

1.  He will get a physical therapist to begin working with him on his muscle tone; and
2.  We have been referred back to a Geneticist for further genetic testing.

His genetic/chromosomal testing came back fine, but he continues to display newborn sleeping patterns, sometimes sleeping 18 hours in a day.  The geneticist came to visit us this afternoon and was unable to get Ethan to show any signs of reflexes.  Last week he had good reflexes, this week he has none.  This means that we will now be doing a full DNA workup on Ethan to test for (among other things) peripheral neuropathy issues, or in common English, issues pertaining to his nervous system.  We really pray that these results will come back favorably, because if they don't, it could be a serious and incurable problem.

Several doctors are now openly admitting that Ethan's issues have been a source of frustration because they have been unable to pinpoint an exact problem and solution.  They continue to confer, so hopefully we will get to the bottom of all of this soon and we hope that there are not several problems occurring at the same time.  We are making the assumption that a surgical procedure is still likely for next week, but don't know if the DNA tests will throw off the schedule.

Ethan now has another IV in place, and had more blood drawn tonight.  When he was put back on his feeding tube tonight, he was regurgitating so much that he was having to catch his breath.  They stopped the feeding and increased IV fluids.  As I type, they are trying to get him back on the feeding while he sleeps.  He needs the calories and he needs to absorb them!  He is still not gaining weight, which has been one of the continuous causes of concern throughout.  Ethan has no choice but to fully trust in those who care for him, much as I am being forced more and more to solely trust in the Great Physician.

I type this on the eve of one month of hospitalization for Ethan.  Robin has not missed a single night with him, and has stayed by his side almost all of the time.  She gets rare breaks, but has really appreciated the visits.  It's increasingly looking like our goal of getting released mid-week next week is quickly slipping away, and we suspect that we're in until at least next weekend.  I will be traveling for work on Monday, and it is my hope that any surgical procedures or major tests will be done on Tuesday or after so that I can be there.  

I don't want to say thank you so much that it sounds trite, but it's all that I can do right now and it comes from the heart, so thank you.  There have been many who have gone out of their way to help us, and it has made all of the difference in the world.  There have been many more with open offers of help, and it's comforting to know there are places to turn.  Thank you all.

Now back to regularly-scheduled programming . . .

God Bless, 


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