Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Goodbye, Hello

on March 7, 2012

Goodbye Broviac! Hello PowerPort!

The hours leading up to surgery were rough, but the surgery itself was fine.

After deciding he didn’t need an IV, the orders came in for an IV at 11:15. After we’d fallen asleep. The transport nurse did a great job, but he still howled. Plus, it sucks to be woke up to be stabbed, you know?

Then we got back to sleep a few hours later only to be woken up again at 2ish because I was nursing him in my sleep and of course he was NPO. Oops. Except we were totally OK, which is part of why I wasn’t worried enough about it to NOT nurse him, because he doesn’t actually NURSE at night. He latches on. He sucks once or twice, he goes to sleep. Even fully awake, he can’t get a letdown going by himself. PLUS, breastmilk is 4 hours before surgery. They moved him to 6 hours because his overnight pump feed is mixed with protein powder, so they treat it like formula. (or they did this time, anyway.)

But everyone made a big deal out of it, even the nurses in pre-op, until the resident came and said “it’s 4 hours for breastmilk, even if he did nurse some, it’s still completely fine.” Yeah.

OK, so I got him back to sleep and then we were up again at 4 for blood pressure, change him out of his clothes and into a blanket, and scrub him down with this chlorhexadine stuff. Even last Friday, they said he was too young for it, and he’s only aged 5 days since then, but apparently now he is old enough, though orders went back and forth on that. Needless to say, he didn’t like that. He did eventually get back to sleep, but I never did.

Add to that the fact that our nurse last night was one we’ve had before and I don’t generally mind her, but she does tend to talk to me like I’m a small, idiot child. And I think I am a mite ornery from being here so long.

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5 responses to “Goodbye, Hello

  1. Yeah for the power port. It was so much easier to do blood draws. We would always use a little emla cream on it before blood draws/chemo. Made life a little easier for our little guy :).

    Thank you for explaining to me when I commented on the other post. I know how precious time can get when you are in and out of the hospital and dealing with all the day to day extras.

    We never did have to do a gtube but I did find a really good website on feeding real food/homemade formula through a gtube, let me know if you would like it. (I don’t want to give you info that you aren’t interested and don’t have time to sift through)

    Still praying for your little guy, what a cutie!

  2. sarahtar says:

    yes, that link would be great. he won’t be on solids for a while yet, and will be on a renal/limited diet when he is, but I strongly prefer to use whole/blenderized foods thru the tube instead of formula when the time comes.

    • This is Samuel’s blog, a little boy who lost his life to chemotherapy and the damage it caused. His mom has written some great info for anyone who has to be fed through a g-tube. When my son was diagnosed with cancer I emailed her and she emailed me right back with words of comfort and encouragment. It was so good to know that I had this info if I need it. I thank the Lord every day that we didn’t. J is still nursing and despite the doctors telling me that breastmilk at his age has no nutritional value, just comfort, I truly believe that it was the breatmilk that got him though the chemo so well.

      http://www.samuelbackus.com/SamuelsDiet.html

      • sarahtar says:

        Breastmilk ALWAYS has nutritional value. Just because older babies/kids can’t live solely on it doesn’t mean it stops having value. silly doctors.

        And even if it was just comfort and no nutrition whatsoever, so the heck what? Good for you for keeping up the nursing. I wish I had higher hopes for my nursing relationship with Teddy…

  3. Steve Parker says:

    I’m so glad that part is over. Good thing the doctor came to your rescue.

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