Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Monday, July 2, 2012

4th GJ feeding tube & GI appointment

When I say that this is the fourth feeding tube replacement, I mean it's the fourth one since we've been home from the long hospital stay back in April to May.  They placed the initial GJ tube on April 17th during her abdominal surgery.  That one flipped back into her stomach shortly after starting feeds a week later.  Then that was the first replacement.  The about another week later, still in the hospital, that one was starting to come our so they replaced it again, the day before we went home.  Which was her 2nd feeding tube replacement.  That was the one that lasted for 6 weeks.  So technically her GJ feeding tube has had to be replaced 6 different times in the past 8 weeks! Crazy!  I've definitely have gotten to know a lot of hospital staff and Dr.'s and nurses through out the past few months. 

So on thursday the 28th, we went in for a GI appointment with Dr. U.  Whitney was weighed and gained about 2 pounds in the past month!  Wow!  That's amazing!  Thank you GJ feeding tube!  Yes, that's a ton of weight for a toddler to gain but Whitney sure does need it.  It's called catch up weight gain.  Poor girl was just so under weight because she couldn't keep ANYTHING down long enough to get the calories.  I can tell she is feeling much better and she looks so healthy.  Although Whitney still vomits a few times a day and retches like crazy, the GJ feeding tube is really working because she's not losing any calories (when it's in place).   She is still underweight according to her height to weight ratio.  Being in the 10th percentile for weight (yay) and the 65th for height.  Once she gets up to about the 25th % we may be able to try feeding her stomach again!  Dr. U is very happy with Whit's progress. 

We are now able to increase Whitney feeding rate from 51ml/hr to 56ml's.  Which means she will get 4 hours off a day instead of just two!  Yay!  She needs 1000 calories a day plus 4oz of water which equals 1120 ml's a day.  She "eats" Compleat Pediatric which is a very specialized formula for tube feed children.  Our home health care company sends us 6 cases a month!  My friend got me some Peptamin Jr. to try for free so I also just started using some of that, and Whitney is tolerating that stuff just fine too.  I like it because it smells much better that the Compleat formula. 

So after our appointment we were able to get in and get Whitney's feeding tube replaced.  They always say that it's a really good and long length and that they placed it in the perfect position.  Surprisingly this one has lasted 4 days so far, don't jinx it! I know some of you out there don't really get it but I'm glad you are trying and reading my blog.  I use to have a seperate "feeding blog" just for updates like this one, then I decided that this blog is about Whitney, and her medical challenges are about her too.  So, I will just have to bore you all with her not so fun updates.  Life with a medically complex child is very stressful and hard.  Plus dealing with all the normal toddlerhood mischief!  But I am part of many online groups that give me support and help me cope.  Thank you to all of my friends and family that have stood by my side and supported me and my family throughout our journey. 

1 comment:

  1. Hey Alicia. So glad Whitney is doing well and gaining weight. Although it's been a little complicated with the GJ feeding tube, I pray it continues to help your little princess grow and stay healthy. I love reading your blogs. I don't know how you do it with all the dr. visits, but so glad you have lots of family and friends to help you through all of this, I hope her progress continues in a very positive way, she's going to make one great big sister to her little brother soon! Take care, miss you! ~ Sandy Camen