Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Friday, March 9, 2012

Upper GI Endoscopy/ EDG



FYI this story is full of tears and vomit so if you don’t want to read it, I’ll summarize first.  We got to Phoenix Children’s Hospital in the morning for Whitney’s upper GI Endoscopy/ EDG (esophagogastroduodenoscopy).  Whitney recovered like a champ.  They took blood work, biopsies, and did Botox injections around her pylorus (is the region of the stomach that connects to the duodenum, the beginning of the small intestines).   Whitney’s stomach is in a very odd “J” shape which could be why she cannot digest all of her food causing chronic vomiting.  If the Botox and meds don’t help then we need to consider other options.  If you want more details then please read on!



This morning we were going to feed Whitney a couple ounces of food around 3am because that was the last time she would be able to have food in her stomach.  I didn’t sleep to well at all because I was so anxious so when my alarm went off, I got right out of bed to go feed Whitney.  But she was already awake, coughing.  She looked like she was going to puke so I got her out of her crib and got a towel ready.   She did of course, which I thought was odd because she usually does great at night.  Eventually Thomas woke up and got us cleaned up and new clothes.  Whitney threw up again, poor thing.  So Thomas gave her a blessing of healing and comfort.   Then we let her sleep in our bed without feeding her. 



In the morning, Thomas gave Whitney her water and meds while she was still sleeping.  Then he went off to work.  Whitney and I got up around 8am, at which time I gave her her last two ounces of water that she could have before the procedure.  I got already to go and finished packing.  I didn’t bring anything much different than I usually do for appointments besides more extra clothes and more food (which I didn’t end up needing much of either).  Plus I brought a blanket and pacifier for her and a book for me.  After I was mostly ready, I held Whitney on my lap while we watched Elmo World on Sesame Street.  I love snuggling her!  


didn't want to play in the play room with the other kids

They say for us to check in at 9am, which is two hours before the scheduled appointment.  So after much experience, we (my mom and I) left the house just after 9am and we got to admitting at 9:40am.  I signed in and they put the ID band on Whitney’s leg and she started crying.  Then we walked all the way across the new main hospital to the older part of the building for the procedure.  She got weighed and measured.  Then we waited in a small room with a hospital crib and TV.  We changed Whitney in to her hospital gown and pants; this was the first time the pants didn’t fall down!   We turned on Tangled while were waiting but didn’t watch much of it because we had several nurses and doctors come talk to us about the procedure.  After a long while, Whitney stopped crying and I put her down to walk around.  She didn’t even cry when some of the Doctor’s came in to talk as long as they didn’t come near her.  They all said that they would take good care of her. 



Eventually, they walked us back to the procedure room.  My mom was holding Whitney.  The nurse took her back and Whitney started screaming.  It was so sad.  I didn’t want to go back with her till she fell asleep because that makes it even worse for me.  Whitney would be scared no matter what.  Then we went out the waiting room.  There was quite a few other out there waiting.  I started praying for a while then got out my Sudoku book.  They took her back around 10:50am.  Around 11:45am the Pediatric Surgeon Dr. G. came out and talked to us.    She said everything went really well.  She changed out the Mic-key button to a Mini button.  Those ones are harder to put in.  It looks great but I’m still not use to it!  Dr. G. said that Whitney’s stomach is definitely a big “J” shape vs. a lima bean shape.  It just grew that way.  It could definitely be contributing to Whitney chronic vomiting because the food just cannot exit as it should.  She has seen this before but didn’t think it caused many problems for other kids.  She doesn’t think it’s caused by Whitney’s CDH issues.  But will ask around about it.   There is not a surgery to fix the shape of the stomach.  She doesn’t know it the Botox injection will work or not because of the shape of Whitney’s stomach.  Talked about a lot of different options to help Whitney stop vomiting and gain better weight.  Nutrition is very important and this young age for brain development.  Dr. G. doesn’t really like any of the options but they are a Nissen fundoplication, GJ tube, or a J tube.  The Fundo (where they wrap part of the stomach around the top of it to prevent reflux/vomit) messes with all of Whitney’s scar tissue and CDH repair surgery.  The GJ tube (it’s still one tube but as an extra port with a long tube going into the duodenum and small intestines) will have to be placed surgically for her because of her odd stomach shape, vs. just doing it in radiology.  And there are many different complications to that.  And the J tube (a separate tube attached to the small intestines) is also a surgery just like the G-tube but parts of the intestines could get wrapped around it.  It’s not natural to feed the small intestines so it has to be a very special formula and goes in a very slow continuous rate.  These are options to be discussed later; we’re not in any hurry to jump right in to these surgeries.   Dr. G. told that Whitney is not any more at risk for these complications that any other child because she is survivor and a miracle.  I am really scared to do any of the other options but I am willing to do what it takes to help Whitney thrive. 



Then the GI Dr. U. comes out to talk to us.  She said that she took a few biopsies to test for a few basic things.  She also took some blood samples to test for other things.  Whitney’s esophagus looks normal and so does her stomach.  She couldn’t even get to scope into see her small intestines because of the shape of her stomach and pylorus and duodenum.  She did the Botox injections even though she’s not sure it will work but it’s worth a shot. She said to stick with the Erythromycin to add in digestion.  I told her earlier that it had made her vomiting worse which is why she thinks that Whitney’s odd stomach shape is a big contributor to vomiting.  So hopefully with a paralyzed pylorus and the stomach being contracted more (Erythro) and it being tighten at the top sphincter from the Bethanechol medicine that soon Whitney will stop throwing up and gain weight.   If it does help then we are looking at doing this procedure every two to four months.  If it doesn’t work then we need to consider our other options.   Dr. U thinks that Whitney’s stomach is like this because of her CDH issues and abnormalities and scar tissues. 



Ready to go home!



So, so far our understanding is that it’s an anatomical issue.  Even though Whitney has vomited her entire life thus far, her stomach has grown to be a big “J” shape making the food settle at the bottom and it can’t exit.  So when it’s time to feed her again she still has a lot of food in her stomach and will just vomit.  She doesn’t even seem to be in much pain before she throws up.  It’s just weird and I hope we can find a better solution to help Whitney.  This also further confirms to me to she is not able to be tube weaned any time soon.   

Insomnia



So after we talked to the Doctors we were finally able to go back to Whitney.  She had already woken up and was hugging a nurse.  I then held her and she was crying a lot but I rocked her sleep again while the nurse was telling us discharge info.  They said it is hard to wake up from anesthesia and disorientating.  After about 15mins in my arms, my left are went numb, so we feed her a small amount of food.  Then I gave her to mom to hold.  Whitney was still in her hospital clothes and we did not want to wake her up to change her!  So after about 30mins or so we decided to leave.  We wrapped her up in her blanket and told the nurse we were going to leave now.  The escorted us part of the way out.  Whitney woke up but didn’t move at all.    So yes, we did leave with their hospital clothes! Ha-ha! Sneaky!  Don’t tell! JK!  We are planning on bringing them back for Whitney’s next procedure! 

My Beauty trying to smile


On the way home my mom feed Whitney two more ounces of food and one ounce of water.  Whitney was pretty whiney the whole way home and couldn’t fall asleep.  Right when we get home...vomit, everywhere, on everything.  Nasty green vomit.  Ha-ha!  We spent the rest of the day trying to relax.  Whitney threw up a couple more times.  Tried to take a late nap.  Then she stayed up till about 11:45pm!  Crazy!  She got about 16oz of food today and threw up at least half of it.  She kept down her 12am feed but woke up around 4:30am and slept with me till 830am!  Very strange sleeping schedule for her so hopefully tonight will be much better. 

threw up on our bed so we set up blankets and pillows in the living room


All in all, even though it was scary and traumatizing for Whitney, she did well and came through just fine!  We are very grateful for amazing doctors and specialist and nurses and for the technology to help our precious daughter. 

Whitney roamed around all night till she finally settled down right by her daddy! so sweet!

2 comments:

  1. So sweet <3 sleeping with her daddy. I love those pjs on her! Im glad they at least have a good idea about why all the vomit and I hope thr horizon works. You guys all need a break from puke ;) And the dr is right, she is a true miracle and the world just wouldnt be the same without our Whitney K <3 (Matthew says this all the time when I show him her pictures and videos, she stole his heart)

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  2. WOW!! It's been a while since I've dropped by your blog- Whitney is such a big girl now!! I love her long beautiful hair - and it just made me so happy to see no oxygen tubes! She has come so far, and I will pray that you all get through this final feeding hurdle soon. Praise God!

    Love,
    Liz (Finley's mama)
    www.finleyanabelle.wordpress.com

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