Yesterday as we went to CHOP we were really hoping the increases in Teresa's medicine would produce better heart function . Unfortunately the news was not good. The meds. are keeping her stable for now but she has not had any improvement in her heart or lungs.
Her tricuspid valve is still severely leaking, her pulmonary pressure is EXTREMELY high ,the pulmonary gradiant has not improved,she has not gained weight in 6 months, her hemoglobin is very high causing her blood to be very thick and her liver is still enlarged.
The scenario the Doctor gave us was: water (blood ) is trickling to the crops (her lungs) through the irrigation pipe ( her pulmonary artery ) to water the plant just enough to sustain it for each day . She is slowly suffocating . Oxygen will help her minimally at best. Her lungs are just too damaged to accept the oxygen . We had started Sildenafil 9 months ago with the hope that it would help to dilate her lungs so she could breath better. She is now on the maximum dose. If this has not helped then she may only have a few more months or possibly by miracle a few years if she does not get any more colds . She will have another heart Catherization in September to give us a better reading on her lungs. Right now we need to pray for her pulmonary hypertension to improve . Without surgery there is no cure for this and her lungs have sustained permanent damage from the hypertension . The cure - A MIRACLE !
Teresa needed life saving surgery the first few months after birth to save her heart and lungs . She received pulmonary banding at almost one year of age and it was already too late . Her lungs were already damaged and the band was not put on tight enough causing the damage to continue.
What is so sad is that Doctors from the United States are always traveling to China for medical conferences to teach on the latest improvements in health care.
Teresa's Doctor at CHOP just returned from a 2 week conference in China , visiting BJ., Shanghai, Wuhan , Nanning and Guangzhou Hospitals... NOT ONE ORPHAN had life saving surgery during this time ! Lucy's Urologist at Hopkins is the worlds best pediatric urologist. He went to China last year to operate on a government officials son in Shanghai. Wined , dined , golfed for 2 weeks and only the government officials son was operated on ... NOT ONE ORPHAN ! Why ? Why aren't they aware of this tremendous need to help the orphans also?
Well, I said this to Teresa's Doctor yesterday and as we were leaving Ed said I probably should not have said that , but you know what , if Teresa had received surgery sooner, her life would have been saved. EVERYONE needs to be aware. They can't just live in their own little world and think someone else will help those in need . They have the ability to save so many lives.
If it is Gods will, my dream is to start "Teresa's Heart Hospital in China" .This would allow for orphans to receive life saving surgery EARLY in life , before irreversible damage is done to their heart and lungs. They would be able to receive the best medical care, not secondary care because they happen to be born orphans.
If anyone would like to help , offer advice or has contacts please just let me know . If this is Gods will it will happen .