Thursday, May 23, 2019

Day of frustration

    So we are all getting frustrated with the pain and discomfort of a hospital stay. Olivia displayed her distaste for the events of today by pretty much refusing to talk or answer questions. She just stares into space or straight at you and says nothing. Is she capable of talking? Absolutely! She is just using speech or lack there of as her way to make us jump through hoops. Brett has shown his frustration with the state of events by asking every doctor who walks in the same questions, over and over again. And I have had to walk out of the room at times when I just can't take the four walls and lack of motivation from Livi.

   Today was what we expected. We had alot of things we were pushing her to do.... Eat, drink, move, rate pain. She had other plans. The day started with her having a tummy ache and a small amount of vomiting. She needed nubain for pain breakthrough because she just couldn't do it on tylenol alone. She did go to the play room, walk a flight of stairs, complete a speech eval, and walk a few laps around the unit. She didn't quite hit the 67 ounces of fluid they wanted her to drink (max we got to was 40 before bed). She did humor us and take a few bites of food for dinner which perked her up for a little while but then got her tummy hurting.

    When the doctors rounded they mentioned discharge in a "few days". Anyone who has been in the hospital with a kid knows that is a moving target. It could be tomorrow or Saturday or as late at Sunday. The cardiologist on service (Levenson) has been great. She did advise us to take it easy for a couple of days post discharge before hoping on a plane to home. One of the big things for this procedure is a post-op low fat diet. One of the main things the lymphatic system carries is fat throughout the body. The more fat intake the more active the system. We saw this when Olivia was a baby and had a chylus effusion post Glenn and she had to be on low fat formula. The recommendation is for a low fat diet for two weeks. If it is not followed closely, patients post this procedure can experience extremely swollen bellies and more pain in the abdomen from the extra lymph fluid which could require needing to be hospitalized. We saw a dietician today to review low fat diet options and it will be a change in thinking for Brett and I. The keto diet we are on is high fat and high protein so it is trying to retrain your brain overnight. We are hoping for a day of smiles tomorrow with maybe even a chance for giggles as we really are trying to get our sweet girl happy again.


  1. Nite-nite Princess Olivia. I hope you are feeling much better tomorrow and maybe, you will go home very soon.I know when I'm sick, I like to be in my own bed! Rest well sweetie and I shall check on you tomorrow evening...GET WELL SOON♥♥♥♥

  2. Hello Princess Olivia..It's 8:00pm here where I live in South Carolina, and I have just gotten home from work at the animal hospital.Things were very busy there today, lots of sick kitties and puppies. I wanted to just check up on you and see how you are doing today.I am going to feed my dogs and take a bath, but I will check later to see if there is any news. Take care sweet Princess♥


Olivia loves to hear her mommy/daddy read your comments!