10/30/2023
Today is Fionas birthday 7:47 pm
At the beginning of October, my family and I contracted Covid. Unfortunately, Fiona, myself, Anthony, my mother, and Fiona's nurses were all affected. It's been a difficult time for us, especially Fiona, as she has lost a significant amount of weight. In fact, she weighs only 39lbs when she was measured last Wednesday, which is extremely dangerous.
We have been facing challenges ever since Fiona received her trexo.
With assistance w her Trexo Fiona was able to walk up to 2k steps a day and she was burning too many calories. It breaks my heart to see that she doesn't gain weight like other children. The absence of the sphincter muscle above her stomach makes it incredibly hard to keep food in her stomach. When she gets constipated, we are unable to feed her at all, causing everything to stop moving and forcing the food to come back up. These complications are taking a toll on her body.
Fiona has been admitted to the children's hospital since Thursday. Yesterday, she had a PIC line inserted and is now receiving Total Parenteral Nutrition (TPN). TPN provides Fiona with 50% of her nutritional needs while I continue to feed her slowly. Our plan is to leave the hospital by Monday and continue the TPN at home. I'm praying that this will help her regain some of the weight she has lost.
On a positive note, we finally have the full attention of the doctors, and they are taking Fiona's gastrointestinal issues seriously. After years of asking for help with no action taken, we have finally set up a visit with Nationwide Children's Hospital. During the visit, we will discuss the possibility of a gastric pacer, which can help with stomach emptying and intestinal movement. Additionally, we will address the dysfunction of the esophageal sphincter, which causes severe acid reflux and prevents proper digestion. This issue is not only painful but also leads to malnourishment due to the inability to keep food in the stomach.
Fiona will turns 10 years old, and I couldn't be prouder of her. Her journey has been far from easy, but she faces each day with a smile on her face. Fiona is the strongest person I know, and love her deeply. I am honored to be called her mother.
I have been fighting for answers for so long. I pray that we are finally taking the right steps to address and resolve these issues once and for all.