MACE/Mitrofanoff Day 8- Solid Foods

For those of you who know that our family has special dietary needs, I will clarify that Anna, specifically, does not have any food intolerances that we know of.  So, although our household is gluten, dairy, food coloring, cane sugar, etc. etc. free (the list actually goes on), Anna gets to eat whatever she wants when she’s in the hospital.  That’s why, besides a bite of pancake this morning, her first real meal was a cheeseburger and mac and cheese.  But don’t worry folks- for dinner she had pizza and mac and cheese.  Nothing like variety in your diet.  Excuse me, while I take a bite of avocado now…


So, while Anna didn’t polish off her entire meal, she did eat what I would consider a decent amount.  The nutritionist gave permission for her to be off her TPN from 2 to 6, to see if that would help her eat her dinner.  The new bag they put on was for less than 24hrs.  The nurse said she expected they would take her off of it tomorrow afternoon if everything is going well.  From about 3:15 to 4pm, Anna and I were in the playroom.  She graduated from the wagon to a hospital wheelchair.  One of those nice, big chairs- three times Anna’s size.  We stuffed pillows behind and around her and attached her bags to the sides.  She was off the TPN at this time, so the nurse gave permission to disconnect her regular IV as well, so we could travel and play with less hindrances.  Good. idea.  However, the clock would “strike midnight” at 4pm,  when an IV antibiotic was due.  Anna enjoyed going to the playroom and watching Mommy try to play the Wii.  It really cheers her up because we don’t have a video game system at home.  She never played it, but she directed me what to do and got to laugh at my ineptitude.  Another enjoyable event was when Trooper, the therapy dog, came to snuggle.  Trooper is one of the shelties that come to the hospital to cheer up the kids.


Anna had to take Ditropan a couple times today to ease her bladder spasms.  She also took Tylenol with codeine at 6:15pm.  We noticed that a few minutes after starting to eat, she would have pain.  I think it may be gas or some kind of gastrointestinal discomfort.  I guess by tomorrow we’ll know a little bit better how things are digesting.

*Cue the shaft of light and singing choir* Soliiiiiiiiids! (Mac and Cheese and Cheeseburgers are part of a balanced breakfast.)

Trooper came to snuggle.

4 Responses to “MACE/Mitrofanoff Day 8- Solid Foods”

  1. donna carley says:

    anna.. thats great that trooper came to see you! cute pic! i had to take ditropan a lot for my spasms too.. and when i first started eating again after my augmentation and mitrofanoff i felt really full really quick.. the intestines are adjusting kiddo! you are doing so good! and even though you dont know me from adam i am cheering you on!! i will always cheer on kids with SB! takes one to appreciate one:)

  2. vonnie bishop says:

    Great news! So glad you are posting this AB – I check everyday to see how things are going.

  3. Cassandra says:

    im am so glad shes eating solids!!!! ;) we miss you!

  4. Beth Cain says:

    Thanks for sharing. I don’t know how you do it all. Special diets, young siblings, blog as well. You are definitely gifted. I love how you write. I’m tired just reading all your family is going through. Hugs to you all. I’m so glad Anna is healing and getting better. My dd Sarah is 3yrs and I know we’ll probably be going through some surgery in the future. Thanks again, praying for speedy recovery for Anna, and strength for you and your husband.

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