Tatyana went home from the hospital yesterday (Monday) evening. Her mom can manage meds at home and it's easier for a family, with an older and younger sister to take care of, as well as patient, to be together under one roof.
Chantelle posted an update on Tatyana's care page and gave me permission to re-post it here:
As some of you may know Tatyana was admitted to the hospital Saturday
because she was diagnosed with Pneumonia. After hours of test they were also
able to come to a conclusion on what is causing her swelling that has
progressively gotten worse since March. The good part for now is she came home
today and she had what is actually called Human Parainfluenza Virus type 3 which is often associated with bronchiolitis and pneumonia.( and yes it was sent to be
tested for Swine Flu results were neg.) The hard part is she has something
called Protien Losing Enteropathy or known as PLE.
What is Protein-Losing Enteropathy?
As the number of survivors after the Fontan operation have increased, an unusual and inexplicable ailment called "protein-losing enteropathy" or PLE, has been noted to occur in some children within a few weeks after the Fontan operation, or years later, in children who are otherwise doing well from a cardiovascular standpoint. Symptoms of this ailment may include swelling of the abdomen, shin and ankle area, and a change in bowel habits with the development of diarrhea and abdominal discomfort
Children with PLE lose protein molecules from the blood serum into the intestinal tract. Over time, the concentration of serum protein in the blood stream can be significantly depleted. One consequence of a low concentration of serum protein is the inability to maintain fluid within the vascular space. Low serum protein
levels can result in the accumulation of fluid outside of the normal vascular
spaces and in the abdomen, ankles and shins. An abdominal fluid collection is
called "ascites", and fluid in other tissues is generally referred to as
The loss of protein into the stool results in a change in bowel
habits with the development of diarrhea and abdominal discomfort. Edema of the
intestinal walls may result in poor absorption of food which promotes further
worsening of the diarrhea. Another consequence of intestinal protein loss is the
depletion of serum immunoglobulins which fight off infection. Patients with
severe PLE are therefore at risk for serious infections at a time when the body
is already weakened by other symptoms related to edema and ascitesPLE after
Fontan operation is a puzzling disease.
At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by improving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it
afflicts some children and not others. Further research into the cause of PLE is
needed. Once the cause is better understood, more effective treatment options
may then be used for this troublesome illness.
~ I know this is a lot of reading but it seemed like the best way to explain it. ( was to copy and paste?)
I just hope and pray that she will make it through this. She is a strong little
girl. I just want her to be happy and play and not feel sick.
I believe they are currently managing Tatyana with medications. PLEASE be praying for this family! I know Chantelle is worried, who wouldn't be? Please pray for God to give her peace in the midst of this trouble time. Thank you, friends!