Friday, May 24, 2019

Working on moving and eating

Today Olivia has been working on getting her body going again.  We make her walk every other hour to help get her lungs clear and bowels moving.  We are trying to get her to drink 60oz today, she only had 40oz yesterday.  She constantly has a gatorade in her face, anything to prevent getting on IV fluids.  She's peeing good, but the bowel movements are just diarrhea for now.  She isn't all about eating yet, but I think we have gotten enough in her to be in the clear for a ileus! 

The one pitfall is that she is on a low-fat diet for a few weeks.  The lymphatic system is full of all the nasty stuff in your body, like fat cells and other waste.  If you eat less fat you theoretically take a lot of the work from the lymphatic system and you allow it to rest.  We've been doing a keto diet at home, so we have been all about fat, so it took us a bit to do some research and try to figure out some fat free things she can eat. 

Mac and cheese is not, but easy mac is.  Chocolate is not, but twizzlers and some other candies are.  We will definitely be getting a list for our candy monster.  We just need her to be a normal girl eating a few good meals a day, and drinking 60oz or more.

Her belly pain is still there.  They stuck 6 needles in her belly, and she has some scabs to prove it.  We get into this grey area trying to figure out exactly what is causing her belly pain at this point.  It can be a number of things, you got 6 needles in your belly, their instruments hit organs, pushing and bruising the belly, bowels starting again, gas pains hitting all that, or bladder full hitting all that.  We make her walk but she looks like a little old lady hunched over doing her walk every time.  Only once so far we got her socks and shoes on, got her in regular clothes and she was upright; that was the morning.  I think as the day goes on it gets worse.  Bottom line is there is this moving target that is her pain.  They say the lymph system being cut in half like it was can cause things to fill up the lymph system and cause it to go to the belly.  Just reading this paragraph should help you see the confusion and thought process we go through on whether to push her or not. 

As you've read before we are big believers in partaking in all the research studies that they offer to Olivia.  We hope that taking part will help others, and they will return the favor.  Eventually, the more research that is done might circle around and help Olivia; just like this lymphatic procedure she had.  While she is feeling this pain, Olivia sucked it up and finished up her neuro-developmental study by having her brain MRI done.  They were supposed to do it during the lymphatic procedure but the MRI team said they couldn't do it because they would have had to utilize another MRI room and they couldn't move her that much.  This brave lady took her IV pain medication at 10:30, and then did the MRI study for an hour which finished up around 1, so her pain med had worn off.  She laid there like a champ with Melanie talking to her from a chair across the room.  It wasn't until the last 3 minutes she cried and said she had to get out of there. 

After that she took a nap and at 2:30 it was time to go finish up her FDA nebulized t-PA study for plastic bronchitis.  With her condition being rare she is the 4th person in 2 years to meet the criteria for the study, and getting this useful medication FDA approved.  We only had to answer a few questions and then she had to go do a pulmonary function test to finish up the study.  She had to pretend to blow out birthday candles into a tube connected to a machine called the body box.  One study gave her a $50 gift card and the other $100.  She is taking her gift cards and whenever we get discharged she is going to the American Girl doll store and she's going to blow it all!  We can't wait to post some pictures of that adventure.  We don't have a American Girl store at home, they are pretty interesting stores from what we have heard. 

As soon as she got back child life came by and invited her to go to music therapy.  Olivia was gung-ho so we went and she loved it so much. She got to play a xylophone, and a keyboard.  The music therapist taught her to play Mary Had a Little Lamb.  Olivia sat upright for an hour loving every second.   She accomplished a lot today and we definitely hit our goals of moving around!

1 comment:

  1. I am so glad she is moving more. She is such an inspiration to all of us. We love you Oluvia!


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