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Follow Up From "On Today's Menu"

Wednesday, November 11, 2009

Well, we learned alot of great information from yesterday's doctors visits.

Surgeon Appointment
Fortunately, Bennett's g-tube is doing ok.  It is slightly infected but it should go down.  However, Dr. Custer agreed that we need something more permanent soon.  So, he ordered a "gastric button" and hopes to put it in Bennett next week.  This means Bennett will have his gastric tube removed and a gastric button put in instead.  No more 7" tube to deal with every three hours.  Now we will have a little plastic piece next to his skin with some sort of "pop top" that we can use to feed him.

Bennett had another biopsy yesterday.  Dr. Custer hopes they got enough of a sample this time.  Breck had to step out of the room when the doctor and two of his residents came in to do the procedure.  It was so hard to hear Bennett scream again and again as they were doing what they needed to do.  How will we be able to endure years of seeing our child suffer?

Dr. Custer doesn't have a surgery date yet but is wanting to put it off for another month or more since Bennett is gaining weight.  We hope to talk to him when we go back next week about getting the date set.

Pediatrician Appointment
Dr. Kemper, Bennett's pediatrician, was happy to meet Bennett for the first time.  This first visit was much longer than any other pediatrician's visit we've ever had.  Poor guy is only 6 weeks old and already has significantly long medical record.

Bennett weighed 8lbs, 4oz.  This puts him in the 7th percentile (despite that he was born in the 50th percentile at 7lb, 11oz).   Bennett should weigh about 10 pounds right now.  Bennett's length measurement was 21 inches long and his head circumference is 13 and 3/4 inches (which is fine).

Dr. Kemper wants us to come back each week to weigh Bennett so she can keep track of how he's doing.  She said he needs to gain 1 oz per day.  She said if we go 2 weeks and Bennett hasn't gained 14 ounces, we will have to have a serious talk about what to do (insinuating hospitalization).

We look forward to our appointment on Thursday to see what the CF doctors will want to do next.  At that point, we will have met with everyone who will be involved with Bennett's care for now. 

The one thing we can say is we are so thankful for the wonderful nurses and doctors who are caring for Bennett.  They are wonderful and seem to really have Bennett's health and well-being as their main focus.

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