September 29, 2012


Since Hannah's ventilators were changed on Tuesday it rings off apean every minute(no over exaggeration) and low minute ventilation a far amount. Since then they haven't gotten back to me on what's wrong or how to change it so I had to change the apnea alarm setting my self making me VERY frustrated  These people are letting me sit at home with a ventilator that is ringing off ALL the time. They also haven't come up with any solution or ideas about how Hannah is puking and not tolerating feeds. Thankfully our paediatric agreed to try giving her stool looseners, refeeding her gtube drainage and sending her to get a blood gas. On top of the bagging Hannah has also been sweating ALOT, has a higher then normal heart rate and needs more support when sleeping. So last night after my night nurse calmed me down about Hannahs ventilator ringing off I started googling....

First thing was Heart Failure Sypmtoms:

The most common symptoms of CHF include:
  • breathing difficulties during the night or when lying down  
  • coughing and wheezing     
  • fatigue and weakness
  • shortness of breath  
  • swollen ankles
  • abdominal pain, bloating  
  • loss of appetite or Nausea  
  • accumulation of fluid in the abdomen  
  • bluish skin around the mouth
  • constipation   ( not constipated but harder then usual)
  • sweating 
  • pale skin and cold hands or feet  
  • urination at night 
My nurse tried to calm me down from that by saying something like " yes but all those things will also be in pulmonary hypertension and short gut" 

so then I looked up short bowel syndrome
  • Diarrhea 
  • Steatorrhea. 
  • Abdominal pain.
  • Weight loss and malnutrition.
  • Dehydration.   
  • Fatigue and weakness.
  • Flatulence. 

Then Pulmonary Hypertension Pulmonary Hypertension

  • Shortness of breath that worsens with activity   
  • Other common complaints are cough,fatiguedizziness, and lethargy.
  • With the advancement of the condition and ensuing right heart failure, shortness of breath may become worse and retention of fluid in the body may increase (due to failure of the heart to pump blood forward) resulting inswelling the legs.
  • People may also complain of chest pain and angina.
  • Depending on the underlying associated disease, pulmonary artery hypertension can have other manifestations. For example, characteristic skin changes seen inscleroderma, or the signs of liver disease seen in portopulmonary hypertension.
  • Rapid breathing, hypoxia (low oxygen level in the blood), and swelling in the legs.
  • In severe pulmonary hypertension, the health care practitioner may hear louder than normal components of heart sounds when he or she listens to the heart with a stethoscope (auscultation).
  • The doctor may also feel elevation of the chest wall when the heart pumps and this may indicate enlargement of the right side of the heart suggestive of pulmonary hypertension (right ventricular heave).
So by this point im freaking out who wouldn't be most of her symptoms are still pointing at Heart failure and then I scroll to the bottom of the Google search and where it says search related to and give a big list the first one was " Life expectancy of a person living with Pulmonary Hypertension" .

"The outlook for pulmonary hypertension depends on the underlying disease and the severity of pulmonary hypertension. Pulmonary hypertension may be a life-threatening condition if diagnosed in late stages or left untreated. The life expectancy of someone with primary pulmonary hypertension may be approximately three years after diagnosis if it goes untreated or sooner if it is severe or there is evidence of right-sided heart failure."   

Maybe I'm crazy, but doctors haven't given me any answers and it's not like she hasn't ever been in heart failure before. 

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