MACE/Mitrofanoff Day 5- NG Tube Clamp

Today was not very monumental.  We had two significant events.  Event number one was that Anna’s suprapubic catheter came untaped from her leg.  Nothing bad happened, but Dr. Perez was very serious about making sure that it wouldn’t happen again.  If it got pulled out in some way, it would be a very bad thing.  He put lots of extra tape on it- now Anna looks like she also had surgery on her thigh.  :)

The other even was positive.  The suction on Anna’s ng tube was turned off, and the tube was clamped.  We were supposed to unclamp it and do suction every four hours if she tolerated it being off for that long.   She tolerated it being off for longer than four hours, because we kind of just forgot about it.  Oops.  There were a lot of small things that distracted both the nurse and me.  For one, one of her IV pumps had a bad battery, and wouldn’t quit beeping, even when it was plugged in.  The nurse had to find a new unit.  We were also checking her lab results constantly to find out about the flu test.  As of this writing, the results still haven’t been posted from the lab.  Technically, that means Anna shouldn’t be allowed to ride the wagon down the hall because of droplet precautions.  She really has to get up and around, though, so the nurses are letting her do it anyway, with explicit instructions not to touch anything.  Since we forgot about the tube, Dr. Perez changed the orders to every 6 hours.  We are hoping she’ll do great and the tube can come out tomorrow.  Otherwise, today was occupied mostly by watching Cinderella, Angelina Ballerina, …..more Cinderella….etc etc.  Still blowing bubbles for lung function.  Anna no longer has a fever (she had a low grade fever a couple days ago) so that’s another positive.


I wanted to take a picture of her surgical site, but I haven’t been here when Dr. Perez comes by.  Brad took a picture for me this morning, but unfortunately it is very fuzzy.  I am going to post it today, but I will take a better picture later.

Sorry for the fuzzy picture. It was low light. This is Anna's MACE and suprapubic catheter.

10 Responses to “MACE/Mitrofanoff Day 5- NG Tube Clamp”

  1. Cassandr says:

    u see doctor perez too? wow

  2. donna carley says:

    i was told when i had this surgery that my suprapubic catheter was the “big daddy”.. its very very important as it allows the bladder to heal and the new mitrofanoff tunnel to heal .. the suprapubic catheter drains the bladder till then… if it were to become blocked off or come out the urine would become blocked off and jeopardize everything that has been done in surgery! i had to irrigate a LOT after this surgery as mucus forms from the new augmentation (the piece of colon taken to augment the bladder still thinks its colon of course and the colon forms muscus.. ) therefore the bladder needs to be irrigated a lot after this surgery as mucus is very prevalent.. it can block the catheter and cause pain. i am glad anna is feeling better.. she is on my mind and in my prayers..

  3. Annie Beth says:

    Thank you for that informative comment. Until this incident I hadn’t really thought about the relative importance of the catheter. I also think it’s good to be warned about the mucus. If you aren’t expecting mucus, or you aren’t prepared to be on top of the irrigation, you could end up in a mess.

  4. Annie Beth says:

    Yep! He’s a good Dr.

  5. dianne helander says:

    Annie Beth…Naomis Urologist told me he doesnt believe he’ll have to augment her bladder because the amount of urine she holds with no pressure on her bladder is good. Of course the upcoming urodynamics will tell us if that’s still the case. I’m wondering if that will make a big difference or not in terms of the ng suction and mucus issues?

  6. Annie Beth says:

    I don’t think the augmentation makes a big difference as far as the ng tube, it just added the suprapubic catheter, but I could be wrong about that. Possibly it could add to the blood somehow. Although, we’ve not had a large amount of blood compared to some people, so we’ve done really well in that aspect. They also want to make sure the bowels are moving and she’s passed gas or had some sort of bowel movement (yucky drainage stuff) before taking it out. We were hoping to not have to do the augmentation either, because our bladder pressures were good and the bladder held a decent amount of urine. We had a weak bladder neck, but no spasticity. The problem came when he went in and found out the bladder wall was thin. When the bladder was completely empty, it would kind of crumple up on itself. This was a problem because once the new “tube” of intestine was hooked up between the bladder and the stoma, if the bladder shrunk up dramatically, it would pull and stretch the tube, which is a bad thing.

  7. dianne helander says:

    Wow that’s really interesting. He did say the final decision would be made during surgery. How is she adjusting to having the tubing in her stomach? Is she concerned about that? Sorry for so many questions.

  8. Annie Beth says:

    She not really worried about the tubing yet. I think there are more immediate things concerning her. Once she starts feeling better, and some of this general pain and yuck goes away, I think she’ll be more away of the stomas and the drainage tubes. No problem about the questions. Ask away!

  9. donna carley says:

    hey annie beth.. i am glad i was able to help… thanks for your response.. as far as the lady asking about the ng tube, if they half to take a piece of bowel for augmentation, then the ng tube is put in to help the area where the colon was cut to heal.. the “anastamosis” area.. it has to heal so that the bowel wont leak out.. and that means total rest for the stomach… also the ng tube helps anna to not throw up after surgery and tear stitches loose in the abdominal area… she would have been in a great deal of pain having an incision like that and then trying to be sick at her stomach! hope her “bowel sounds” are good.. i heard that term so much when i had this done…! it means things are waking up… and ready to start functioning again… the mucus thing is a big part of this surgery.. i had to irrigate with saline solution so much .. as the mucus clogged the catheter and backed up in the catheter causing the urine not to flow well.. it hurts like crazy when that happens.. for you it would be like a big clamp on your bladder not allowing you to go normally.. pain and spasms.. stay on top of that irrigation !

  10. dianne helander says:

    Thanks for the clarification. I’m so nervous for Naomi to have this surgery in March. She is seven years old and only 28 pounds. I just don’t want her to lose any weight.

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