Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)


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Thursday, July 19, 2012

5th GJ feeding tube replaced with a G tube

It's been a busy couple weeks keeping up with this girl, all her therapies, Doctor appointments, and packing to move!  Feeding therapy is going well, we just try to get her to play with food and kiss it bye bye when we clean up.  Whitney really hates touching anything wet.  Or getting crumbs on her face.  But at least she is trying.  We are going to start getting her more involved in the whole process.  Like grocery shopping, cooking the meal, and "eating" the meal.  We don't try to feed her yet, just try to expose her to food and play.  For one, she is on a continuous drip, therefore, she is not hungry!  And two, she doesn't actually know how to chew and swallow food (dysphasia).  A few days ago, I snuck a goldfish in her mouth.  She actually held it in tight and then tried to swallow it but gaged and threw up.  I told her I was proud of her for trying!  With her other two therapist that come to the house, all they really do is play with toys with her.  Not really sure why, but I'm way too nervous for them to try any feeding therapy with Whitney because they just don't know her well enough. 




On Friday the 13th,  Whitney threw up in the morning as usual but this time it was dark brown with red floaties.  Probably blood.  We had a Pediatrician appointment that morning so we just asked her about it, and I called the GI nurse.  After jump starting the Jeep, we got to the appointment.  It was also raining that day.  While there, Whitney threw up formula!  Darn, that means the GJ feeding tube is back in her stomach, maybe poked something to make it bleed.   Anyway, Whitney weighed in at 24 lbs!  She is finally in a healthy weight percentile!  Above the 25th% I believe.  She gained over 4 pounds in the past 3 months!  Wahoo.  So the appt. went pretty well, talked about the normal two year stuff, signed a medical info release, and got a couple of shots.  Whitney only needs two more shots then she up to date until kindergarten. 




The GI nurse called me back.  I called her a second time asking if we can replace her GJ tube with a G tube and see how that works out.  So she said the DR. U. said Whitney is "nutritionally" able to switch to the G tube while being on the same continuous drip rate! Yay! She said that either IR or the Surgeon could do it.  Since it was Friday, the surgeon couldn't but could possibly do it the next week, so I voted for that. 




My sister, Jessica (Cacaca) had a birthday celebration.  She turned 24 on saturday!  We went swimming.  Whitney loves to swim!  Sunday we went to church.  Whitney loves church!  We also had dinner at Thomas's parents house.  Whitney loves going over there! Cameron loves going over there for dinner too! haha!  I'm 23 weeks pregnant! And yup, his name is Cameron!  I love it!  Not sure on his Hawaiian middle name yet but I'm sure something will inspire it.  Cameron also loves to "tickle" my insides!  He is always moving around and tickling me, he also like to kick or punch, but mostly tickles,  yeah, kinda annoying but still fun! 





So on Monday, the GI called me and said that the surgeon can't get us in till next week so we should just do the switch in IR.  Now, Whitney hasn't thrown up formula all weekend so I was really confused about if the tube was misplaced or not.  I decided I wanted an xray first to see if it was in place or not.  The they scheduled that and a possilbe tube change.  Whitney and I with my mom headed down to PCH that afternoon.  It was right during Whitney's nap and she was not up for this adventure.  Poor girl was so stressed out that she threw up FIVE different times!  So sad.  They took the xray and sent us to IR who said  the tube is in her stomach with a very small portion still kinda down in the intestines but pretty much feeding her stomach.  So they took her back and put in a brand new G tube!  Whitney was so tired whe fell asleep on the car ride home.  We were at the hospital from 2-4pm plus and hour of driving time.  Whitney took a nap from 4-6pm.  And seemed to be feeling ok afterwards. 





Then next day, Tuesday, she threw up two times, about 3 oz each.  Then Wedneday the 18th, she threw up just in the morning, and today... nothing!  Don't jinx it! Knock on wood!  She probably will later today but I'm very surprised that she didn't vomit this morning!  (SHE JUST THREW UP BEFORE I FINISHED THIS POST)  We are still very busy with therapies.  I have a level two ultrasound tomorrow for Cameron just to double check everything.  Then Whitney turns TWO on Saturday!  Wow!  I can't believe she's two!  She's getting so big! 




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