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Wednesday, June 13, 2012

GJ tube replacement

Yesterday morning, Whitney woke up earlier than usual to throw up. She threw up twice and was retching a lot more than normal. BTW, She always throws up once every single morning and has for pretty much her entire life! When I got up I saw that her vomit was brown instead of the normal yellow-clear color of her stomach juices.  I was pretty worried but decided to see if her throw up got worse through out they day before I called the Dr.  She did great the rest of the day but threw up again before bed time.  I think that was clear again though! 

This morning she woke up early again to throw up and did it twice with a ton of retching and it was brown!  So I decided it needed to be checked out, especially before our beach vacation next week!  I called Pediatric Surgeons office first and left a message.  Then I called GI and actually talked to the nurse.  Then she talked with Dr. Ursea who put an order in for xray and possible interventional radiology for GJ tube replacement.  It was around 11:30am before they called me back to say bring her in to the hospital to be admitted for an xray! 

So I called my mom so she could come with us and I started packing our bags for a day at the hospital, anticipating a long and boring wait!  We arrived just after 12:30pm to check-in.  Apparently they didn't get the order yet so it took a while to find it and get all checked in.  Then we went to get the x-ray taken at about 1:30pm, which is about the time I turned her feeding pump off.  Whitney had fallen asleep in the car and woke up before the xray.  When the volunteer came to walk us back she started screaming and crying! She gets so scared and anxious about what's going to happen.  She even threw up while waiting for the results because she kept getting so scared any time someone just walked by!

I couldn't be in the room during the xray because I'm pregnant, by the way! About 18 weeks along.  Also I had an anatomy ultrasound appointment today but I had to reschedule it to tomorrow!  Which is fine, just pray for good news! Anyways, when they came back with the results they said that it looks like it's in the right place but they want us to go down to IR (interventional radiology) so that they can check placement better and maybe replace the GJ tube.  The transport guy comes with a huge wheel chair. So my mom held Whitney in it, crying the whole way!  Why we couldn't just leave her in her stroller, I have no idea! 

We didn't have to wait too long to get her back there, which is the part I thought would take all day because they said they were booked and might have time to squeeze us in!  Maybe we just came at a good time though because they were pretty much ready for her.  I asked them for versed but the Dr. said that they never give versed and that we'd have to go through pre-op for an IV and the versed.  I though they would be able to give it to her through her GJ tube but they said they don't and can't!  Reluctantly I said ok, fine.  I put Whitney's sunglasses on and carried her back there.  I was able to carry her to the door but we weren't allowed in the room with her. :(  Poor Whitney was crying the whole way back and was grabbing me trying to hold on to me when I handed her over to the nurse.  I tried to hold back my tears, it was so sad.  I wish I could have held her hand while she was back there alone. 

This was about the time the surgeons office got back to me about getting her in for an x-ray! haha, mental note... they are slow!

It seemed like Whitney was back there for a long time but it was only 10 -15 mins.  They brought her out and she clung to me! They said that when they checked placement by putting in a liquid they can see on fluoroscopy, it was heading up towards her stomach instead of down her intestines.  So from what I understand, the tube wasn't all really in her stomach but flipped towards it with in the intestines! Which definitely explains her symptoms!  They were able to replace it with no complications and said we are done! My mom started up her feeds again in the car.  So we made it home by 3:30pm and Whitney is happy again!  I'm so glad I brought her in to get it checked out and replaced!  It's been exactly 6 weeks from the last time they replaced it! Which they say is pretty good for Whitney but I hope she can go longer this time!

1 comment:

  1. I have been following your blog since my grandaughter was diagnosed with LCDH in May 2010. She was born Sept 2010. She reherniated and had surgery Oct 2011. Since then she has been doing great. Just wanted to let you know how much your blog helped give us hope before my granddaughter was born. It also gave me a personal look at what to expect, instead of just reading all the medical info on line. I think I will always follow your blog:0) I feel like I know Whitney. She's a beautiful girl. I hope she has no more complications. She has been through so much. Congratulations on your pregnacy. My daughter is pregnant again too. Take Care!