15 November 2009

Cook Hospital Day 4 - Update

We are continuing to learn more about ways to help our boy... 

We think we have better narrowed down at least two reasons for Bennett's pain, lack of interest in food, lack of weight gain and consistent episodes of throwing up.  It seems Bennett has an intense amount of pain related to his feedings.  He may be having very painful abdominal cramping as the food moves through his intestines (something very familiar to many with CF).  And we think he may be dealing with severe reflux (not just acid reflux).

The GI doctor agreed with us and ordered to give Bennett a few tests on Monday and Tuesday to see if severe reflux is his issue.  If it is, it may be necessary for Bennett to undergo surgery for a "nissen fundoplication" or a "fundo."

We aren't sure whether Bennett qualifies for a fundo but the doctors said alot of CF kids do have them.  The reason for this is often that CF children have to eat so much to stay healthy (since their body does not absorb much of the nutrition from the food) that it causes severe reflux and lots of pain.  Therefore, a fundo helps prevent the reflux and keeps them more comfortable. 

A fundo would prevent Bennett from being able to burp but gas would be released the other direction.  While a fundo is permanent, most children who have it done as babies end up outgrowing it in childhood.  (It can then be redone at this time, if necessary.)

We are anxious to talk to the doctor today about how to help him with the intense pain he gets when food is moving through his bowels. We really don't know what to do about that.

Both of these issues are very very important as Bennett continues not to gain weight.  He weighed at 8lb, 2oz today and is supposed to be over 10 pounds, gaining an ounce a day.

We feel pretty anxious about it because malnutrition is an adverse prognostic factor in CF.  The longer he stays malnourished, the more severe his CF is likely to be for him later in life.  In addition, malnourishment can eventually affect development, including his cognitive ability.  So, we will likely stay in the hospital until these issues are better resolved.

One thing that has been thrown around is keeping Bennett on continuous feedings all day and all night.  It would consist of sending us home with a little backpack that would always pump Bennett with food.  We're pretty disappointed to have to consider this option as it's just one more thing to have to deal with.  But ultimately, we'll do whatever it takes for our son.

We should see the doctors by later today to find out any more news.

1 comment :

  1. Hi Breck, Grier had severe acid reflex starting at one week. We thought it was colic at first, but no. But in the end, we just had to feed and sleep her upright. She wore a bib constantly for her first 6 month and took baby Zantac (which actually made symptoms worse, when she was getting better on her own.

    But exactly at 6 months, when she was starting to get more mobile and sitting upright, it stop immediately.



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