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Sunday, July 1, 2012

3rd GJ feeding tube Replacement & ER trip

So the Monday morning after our amazing vacation, we headed to the hospital to replace Whitney feeding tube.  It was pretty much the same old routine except this time we got to skip the xray!  I suppose they believe me now when I say the tube is in her stomach and not her intestines now.  So we got to go staight to imaging and admitted Whit and then sent us straight to IR.  That definitely saved us lots of time and crying episodes. When they take her back to the room I stand by the door and listen to her cry for a bit.  She cries for about 5-10 mins before she calms down.  I suppose they can still do their job well because the Dr.'s don't think she needs any meds to help calm her.  They all say it doesn't hurt and that she is just scared.  I feel so bad for her.  I wish me or gramma could hold her hand while they replace her tube.  Whitney usually takes a nap afterwards while me and my mom grab some yummy salad at the cafeteria. 

When we got to PCH there was a group of kids singing and dancing with lots of people watching them.  Things like this just make feel so good inside and I wanted to cry and hug them all.  

Whitney really enjoyed watching them and was clapping along.  I think it makes her feel good too. 

Tuesday morning, Whitney sleept in till 11am! I don't know why she slept for so long but I kept going in there every 30 mins or so for a few hours to make sure she was okay.  I went ahead and canceled her feeding therapy appointment at 9:30am.  Maybe just a growths spurt!?  Anyway, that afternoon she threw up a lot of formula!  UGH!! I can't believe the new feeding tube only lasted one day!  It also makes me sad that her poor tummy can't handle having food in it.  And she dosen't even have a diagnosis for that issue!  So I called GI and they said her Dr. is out of town and can't write the order for a new tube in IR.  Sounded strange to me!  I said she's fine, not dehydrated or anything, but the nurse said to go the the ER if she can't keep anything down.  Well, I'm definitely not taking her to the ER for a tube replacement.  Talk about stressful!

Wednesday, around 11:30am, as Whitney was walking down to hall to go down stairs for a bath, she fell down. I saw her on her hands and knees and when I picked her up she collapsed, and again.  I started to get really worried.  Whitney seemed to have pain in her left knee and pointed to it and said "owie" and kissed it better herself.  Then she still wouldn't walk but crawled around!  I thought she must have twisted it or fractured her leg!  She wasn't in pain anymore but still couldn't walk, so I gave her a bath and laid her down for a nap.  I called the pediatrician's nurse and she said to take her to the ER after her nap.  Around 3pm her DSI came over to do therapy and I told her about Whitney not walking.  So I got Whit up from her nap and took her down stairs so we could see how she was doing.  She just wanted to sit so the therapist and I made her walk a little ways.  Whitney walked a little bit but started to get really wobbley and cried and held on to the wall and baby gate.  Pointing to her knee saying owie.  The therapist agreed that I should take her to the ER.  She stayed with Whitney, playing with toys, while I got everything ready to go and waited for my mom to come home. 

By the time we got checked in to Phoenix Children's ER it was about 4:45pm.  They took and xray of her leg around 5:30 or 6pm.  I asked if IR was there to replace her GJ tube but they said they leave at 5pm.  Oh well!  There was no outward 'owie' on her leg. Whitney cried alot but luckily she didn't get poked or anything painful.  She also wanted to get down and she was finally able to walk on her legs and bear some weight on her left leg!  I was so glad!  around 7pm they came in and told us the xray was normal but that these fractures don't always show up right away and to keep a close eye on her.  So glad she didn't need a cast and I opted out of doing a leg splint!  Whitney walking just fine now so I don't know what happened to her poor leg that she couldn't walk on it all day! 

Playing with Gramma's Ipad in the ER

Talking to Grampa on the phone in the ER

Trying to walk in the ER 

1 comment:

  1. Oh my gosh that whole thing with the leg is so scary and I'm hoping her tube stays in the right place for a while this time b/c that two pounds of catch up weight is AWESOME!! She looks fantastic. And don't worry about "boring" feeding details. I like to hear all about Whit.