03 August 2010

A Full Day At Cook Children's Hospital and Clinics

Yesterday was a long day.  So long that it took until today to post about it.  From 7am-7pm yesterday, Breck and Bennett were either on the road, meeting with doctors or waiting in waiting rooms.  But it was very much worth it.  We gained alot of good information and learned things are going well!  Here's what happened:

Bennett had a liver ultrasound early yesterday morning.  The ultrasound was ordered in order to look at whether or not Bennett's liver is working properly - if the blood was flowing through it correctly and if any scar tissue might be building up.  If it was found that Bennett's liver isn't working properly, he would be monitored and potentially need a liver transplant one day (which is not necessarily uncommon with CF).

Fortunately, it turns out that everything looks great!  The doctors will continue to monitor his liver enzyme level (he will have these levels examined this week) and consider Bennett at higher risk for liver disease since he was born with Meconium Ileus.  But for now, his liver is looking beautiful! 

The CF Doctor was really happy with Bennett's weight gain.  He gained two pounds since his last appointment with her a month ago (making him now 19.5lbs and in the 21st percentile).  We have been instructed to increase Bennett's feedings by 10% as we are hoping to get him in the 50% at some point.  Studies show those with CF who stay at the 50% percentile do better with their lung function later in life so we are working our way up there by increasing his caloric intake regularly.

The nurses took a culture of the back of Bennett's throat.  So, we should hear later this week whether or not he is culturing any bacteria.  If he is culturing an infection, we will likely be put on antibiotics.  Since these types of infections can be antibiotic-resistant and cause long-term lung damage, we are hoping for a good report and a clean culture!

The CF doc looked at Bennett's poop and said it looked good.  It's the right texture and color, indicating he is absorbing his food properly.  (No matter how you cut it, it's still weird to stand in the doctors office and talk about your baby's poop - especially when the med student following the CF doctor leans in so he, too, can see Bennett's poop...and it's just as weird to look at the chart in the GI doctor's office that list descriptions of and pictures of poops so that one can merely point to the one that looks most like their poop.  The word "sausage-like" was used in almost all of the descriptions.)

The GI doctor has decided to give Bennett a good GI workup considering all of Bennett's GI symptoms and past intolerance of feeds.  So, we will go in tomorrow to our local Pediatric office to draw Bennett's blood and run some tests.  We will also be collecting stool samples (Don't be surprised if, should you visit our house this week, you find our child's poop in the fridge! :))

We will also be increasing Bennett's feeding pump time from 30 minutes to 1 hour in order to see if this helps him tolerate his feedings better as he has been projectile vomiting after almost every feed.   In general, we are most focused on establishing Bennett's feeds.

The GI doctor is very excited about our evaluation set up for Bennett at the Baylor Feeding Clinic in September.  He said it's a great program and he highly recommends it. So, that is fabulous!   All of Bennett's other doctors are on board for the Baylor Feeding Clinic as well. 

Yesterday's appointment was great on many levels.  We were able to look at all of Bennett's issues (or potential issues) and evaluate his status on each one.  Results from his bloodwork and other tests should trickle in over the course of the next few days.

As a recap for ourselves, here's a breakdown of what we're monitoring:
LUNGS - sound good; any runny nose or cough is not an infection or problem; throat culture will come back this week revealing any unknown infection
LIVER - looks good; continue to monitor
FEEDS - lengthen the pump time to 1 hour; eventually increase feeds by 10%; be evaluated at Baylor Feeding Clinic; Bennett is gaining weight well.
POOPS - looks good; malabsorption does not look like it is an issue; test to make sure there is no infection in the stool

1 comment :

  1. You gave me a whole new appreciation for sausage! :)


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