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Monday, December 3, 2012

Butterflies in Mommy's stomach

I didn't want to get out of bed this morning. I went to sleep thinking about everything that's going on this week and woke up still thinking about it. (and with a headache) I really just wanted to go back to sleep but I had a sweet little 3 year old running in and out of my room giving me kisses and flinging the covers over my head. She likes to cover me back up after she gives me kisses. This morning she was jabbering about being happy too. She was full of energy, happy, and SO excited to go to "my PWEE-stoo-oh" (preschool). I didn't want to kill her happiness so I didn't do the half feed that I normally give her before school. Instead, I gave her medicines and then gave her 1 ounce of formula so she wouldn't be completely empty.

*sigh* It's been so nice this year not having any medical hiccups to speak of. She's been stronger and healthier this year than she ever was before. Today I'm fighting the mommy guilt though. She was so sweet and happy when she came in to see me this morning and all I could think was that tomorrow, I'm going to take her to the hospital and screw all of that up by subjecting her to what I anticipate will be a small but painful little outpatient surgical procedure. Her stoma has been virtually problem free for a long time now and even though I know the scar tissue needs to come off for her safety, I know we're opening her up to new granulation tissue and possibility of  infection. Not to mention the usual risks of anesthesia and endoscopy with biopsies. The beautiful new wing of the hospital was finished after her last hospital stay so it's been wonderful that she hasn't had any negative associations with it when we've visited or gone to appointments there but I can't help but think that that will probably change tomorrow. She loves her GI doctor (even though she gets major anxiety when we see her) and her surgeon but tomorrow will probably screw that up too. I feel silly for being nervous about this procedure, which in the grand scheme of things is very minor, but there are ALWAYS risks involved.

I'm trying not to even get my hopes up that her GI will find anything helpful during the endoscopy. I'm praying that she will, but I'm not holding my breath. Even the small anomalies she's found before (like the ampulla that releases bile into the intestine being closer to her stomach than normal) didn't help us with anything. The hard part about sending her off again for another endoscopy is that every single time, I'm torn between wanting her GI to find SOMETHING abnormal that will explain the recent problems she's having (eosinophils, something anatomical, a giant lump of granulation tissue on the inside that's causing the bleeding, etc.) and feeling bad for hoping that she finds something abnormal. It's not that I WANT something to be wrong with Raya, it's just that there IS something going on inside her body and I'd like for there to be an explanation of what it is so that we can do something about it to make her more comfortable and get her back to her previous feed rate/schedule. As it stands right now, she's going the opposite direction. Want to know why she was so happy this morning? I fed her at 125ml/hour instead of 250ml/hour for her last feed of the night last night and left the farrell bag hooked up all night. She was feeling great this morning, but having her feeds take 2 hours and using farrell bags all the time is SO not ideal. I'm going to feed her at 125ml/hr today without the farrell bag and see what happens. It's just a bummer that she's gone from 600ml/hour bolus feeds to 125ml/hour feeds. Hopefully we can reverse that trend soon.

Oh yeah, and I'm supposed to take my midterms this week by Saturday. Until now I've had high As in my classes but I'm pretty sure at least one of those is going out the window when I take the midterm. :) There's just a lot going on this week and I don't want to do any of it, especially tomorrow.

2 comments:

  1. Brandiis, have you not had good luck with Versed? I wonder it you could get the dr to prescribe some to even give before you leave for the hospital.

    ReplyDelete
  2. Sorry for the two i's in your name. Silly iPad.

    ReplyDelete

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