Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, June 19, 2012

2nd GJ tube Replacement's only been one full day since her previous GJ feeding tube had to be replaced!  This morning when Thomas told me that Whitney threw up formula, I was in denial!  haha! I just put the covers over my head for the next 30 minutes.  But I had to get up and change Whitney's diaper and such.  Then I called the GI office and left a message that she threw up formula and needs her GJ tube checked out.  While waiting for the return call, Whitney and I just layed and played in bed for the next hour and a half.  I just love how she likes to hang out with me even though I'm just tired and laying in bed!  She could have gone and played with her toys or watch tv but she rather'd jump on me and poke my eyes and tickle my ears!

Eventually we got up and got ready to go after the nurse called me back saying she needs an xray and possible IR to replace her tubie.  IR is going to call me to tell me when to come down.  They called me around noon so we left the house around 1230 and got to the Hospital by 1pm.  Whitney fell asleep in the car again and woke up shortly after we were admitted.  We had the blanket over her in the stroller and gave her her DS to play Mario on it so she didn't know where we were.  But as soon as they came to take us back she starts her scared, sad cry.  I think it was the voices and the doors beeping.  I asked them if we could just skip the xray because last time they couldn't tell anyways and I knew it was in the wrong spot and just needed to be replaced!  But the said no, it's protocol.  We learned that this time the tube was all coiled up in her stomach.  Ugh.

 Then they escorted us to IR where Dr. Towbin came out to talk to us.  I remembered this Dr., mom and I didn't really like him.  Although he is the one whose tube placement lasted the 6 weeks.  We didn't care for him because last time he was asking me a whole bunch of weird questions about why it came out and why she needs it, and we were just sick and tired of being in the hospital for the past 2 weeks and didn't understand why he was asking all these questions.  Anyways... he asked the same questions again but this time it was a bit more informative!  He actually explained most things really well to us and I felt more comfortable asking him my questions and he listened!  I asked what if it went back in her stomach and he said it doesn't really bother the stomach, you'll just be feeding the stomach.  I asked if she retched enough could the tube go up her throat, and he said it could and that's very dangerous.  I really don't want to go to the hospital in CA on vacation so if something bad happens, I'll just replace it with a G tube my self. I also asked him if he needs and xray first or if we could just go straight to IR.  He said he usually likes the xrays first but is fine with Whitney not needing one.  But he's not sure about the other Dr.'s, so mostly likely she'll have to get the dumb xray first, before they will check and replace her GJ feeding tube. I also like him now because he said that I was very informed and know what to do with Whitney's tube!  Most Dr.'s don't like to tell parents that!

So they took her back to fix her tube.  They used the same tube as last time.  Dr. T. said he put it in the most perfect place and that it looks perfect now.  I'm betting this one will last another 6 weeks!  Whitney did throw up while she was back there so I'm a little nervous about how "nice" they were to her.  She didn't throw up last time...  But on the other hand, that's just Whitney!  She vomits when she cries a lot.  So I'm not too worried about that, plus she wasn't crying when she came out to see me and said my name and gramma's name in her sweet perfect voice.  She was still super scared this time as she was last time, but she didn't shudder and cry every time someone walked by or opened/shut a door! 

We made it home by 4pm so it took about as long as it did two days ago.  Whitney was happy and back to normal the rest of the day!  She was playing out side in her house while I was watching her from inside and I noticed she looked scared and was kinda crying while looking out the door.  I came out and asked what was wrong so she did her sign for butterfly... which to her means that she saw a bug flying or crawling around.  Then she pointed to the ground and I see the tiniest little bug moving, so small I don't even know what it was!  I asked her if she wanted to come inside (after giggling) and she did but was to scared to come out of her play house!  haha!  I told her it was okay and she eventually, cautiously, side stepped out of there watching the ground closely!  She still played outside for another few minutes though till she came back inside to cool off.  Anyone else's toddler terrified of bugs/flies?  Or something so small and silly (to you)? 

1 comment:

  1. Oh man. Here's praying it stays just where it needs to be for your whole trip. She's darling, I loved the pics.

    And I have the opposite problem with Caleb - he LOVES bugs. And that means he'll go "HI BEES!!" and try to pet them and that leads to me going "ACKKKK!!" and trying to grab him. B/c while I'm glad he's not freaked out scared, petting bees is a bad idea....