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MACE/Mitrofanoff Day 7- Thick Liquids

Today, Anna graduated from clears to thicker liquids.  She’s not as excited about this as one might imagine.  For lunch, they sent her a yummy looking strawberry smoothie from “Freshens”.   She took one sip and rejected it.  Ben (age 6) was there to save the day, though.  He slurped down almost the entire thing.  Anna is allowed to have anything she doesn’t have to chew, pretty much.  Thick soup broths, smoothies- even ice cream.  I’ve ordered a Chocolate Boost for her to try this evening.  I think her taste buds are a little off, so maybe the chocolate will entice her.

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While Anna still has her central line and TPN, she did get to ditch the leads.  No more heart rate, respiration rate, oxygen, etc.  An improvement, although small.  The central line was still pulling out, even after the extra tape.  The day nurse ended up taking all the tape off, cleaning the site, placing a new cushion around the line, and adding new tegaderm.  At my request, we also took some steri-strips and taped the bundle of lines to her neck about an inch above the port.  The steri-strips don’t stay on very well, though.  A different type of  tape would have worked better.

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Last night we realized she would have twinges of pain when her suprapubic line wasn’t draining.  The problem was not mucus but the position she was in.  If the pee stayed in the top of the tube (the part laying on the bed) and didn’t make it off the edge of the mattress to drop down into the bag, it would back up just a little bit.  If we check on it periodically and move it around, we can prevent this from happening.  The only real problem is that when she is in the wagon, her body is down lower than the line.  The pee can’t flow up the tube and over the edge of the wagon without a bit of pressure building up.  That cut our craft trip short this afternoon.  Child Life let us pack up her supplies and take them from the playroom back to her room.

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Last night Brad had a nurse he didn’t prefer.  As many times as we’ve been to Levine’s, we’ve never had a nurse that was less than friendly and sympathetic.  While not doubting this lady’s ability to preform her job, Brad felt that Anna was not as at ease with this particular individual because she was more brusque.  He mentioned this to one of the nurses at the desk, and they were quick to tell him he could both request a particular nurse or request to not have a particular nurse.  Once again, Levine’s proves that you don’t have to settle for a less than excellent experience.

Ben's visit made Anna smile. Siblings work wonders.

Anna's "thick liquid", Boost. We need to label it "Drink Me", a la Alice in Wonderland.

8 Responses to “MACE/Mitrofanoff Day 7- Thick Liquids”

  1. Allue says:

    Thank you so much for the updates. Been thinking a lot about you. Lavines is a wonderful place to be :) we had a couple squirly nurses and we didn’t have them again.

  2. dianne helander says:

    I’m so proud of her and the whole family. What a great example.

  3. donna carley says:

    i had the same problem with the suprapubic hurting if the urine didnt flow downhill… could anna not ride in a wheelchair so the catheter would hang lower than her waist and the bag be hung lower also?? it hurts when the urine backs up!! i remember it well!

  4. Carol Hartman says:

    Seeing that little smile on Anna’s face does ME a world of good! :) I’m so glad Ben got to visit; I know he misses his buddy. I’m glad to hear things are progressing day by day and maybe her taste buds will normalize soon. Love y’all!

  5. Daria says:

    She is beautiful. Thank you for your blog. Your strong family is in my prayers.

  6. Annie Beth says:

    This is a good suggestion. We were using the wagon because it has a pole attached for the IVs, etc. Then you don’t have to worry about steering both the person and the pole. Also, because of the surgery on her feet, I think they were keeping them elevated. However, I believe that if we want to go anywhere for an extended period of time, she will have to start using a wheelchair. Probably the hospital ones that have arm rests. I would hate for her to fall out of hers. (She has a Quickie GT with no arm rests.)

  7. donna carley says:

    i have a quickie too with no arms… its like a little skate board nearly.. she could elevate her feet in the wheelchair though… they could raise the leg lifts.. believe me you start finding all kinds of ways to make things work.. anna looks so cute in her pic.. what a precious little girl!

  8. Vonnie Bishop says:

    So glad to see that sweet smiling face! I’m praying for all of you. You are such a special family.

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