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Evelyn’s Story

Evelyn Hazel Keltgen was born June 23, 2007.  She was diagnosed with primary pulmonary hypertension at the age of 6 weeks and started treatment by the age of 3 months.  Her PH specialist is Dr. Ivy in Denver, CO.

Evelyn is a wonderful girl - smart, active, and full of life! She captures the hearts of all who know her.

Evelyn was born June 23, 2007 and within minutes of birth started to turn grey and not be able to breath. She was diagnosised with bilateral tension pneumothorax and was air-lifted to Children's Hospital in Minneapolis. The flight team arrived a couple hours after her birth and put a chest tube in on the right side to relieve the pressure. The left was not severe enough to require a chest tube. She spent 6 days in the NICU. They gave her a clean bill of health with no long term effects. At the time of discharge her breathing was still rapid (about 80 breaths per minute) and they said it is common with pneumothorax and it should resolve in one to two weeks. Two weeks came and went and the breathing remained rapid. It wasn't until six weeks old that doctors started to become more concerned and she was referred to specialists (pulmonologist first, then cardiologist). She had echocardiograms that showed pulmonary hypertension and enlarged right atrium and ventricle due to the heart having to work hard to pump blood to the lungs. No heart defects were found. She had a CT scan of her chest and no abnormalities were reported. Therefore, she was given the diagnosis of primary pulmonary hypertension (no known cause for the pulmonary hypertension and therefore no way to fix a problem to correct it). In other words, there is no cure and will eventually lead to death. There are some drugs that are used to reduce the pressure and slow the progression of the disease, however, as the condition progresses the only other thing is a lung or lung-heart transplant. If left untreated the right side of the heart will be overworked and fail - cardiac arrest. None of the doctors can give us a time frame on how long she can sustain or her prognosis. None of the doctors have ever come across another case like Evelyn's before. Evelyn's care was initially provided in New York City by the late Dr. Robyn Barst, world-leading specialist of pediatric pulmonary hypertension. In April 2008 we started traveling to Denver, CO to her current PH specialist, Dr. Dunbar Ivy. Her follow-up care between heart catherizations is done in the Mayo Health System in Rochester, MN. We initially flew to NYC every three to four months where Evie had a heart catherization, EKG, CT, echocardiogram, and blood work. We currently travel to Denver once a year with a heart catherization annually.  Read our journal for on-going updates.

Evelyn has responded well to the medications and her pressures are remaining stable with a mild level of pulmonary hypertension.  She is growing well and developing normally.  She enjoys playing the piano, riding horse, riding bike, and learning about all types of animals. 

We have been humbled by people's generosity to us.  Your prayers and support are appreciated beyond words. 

Latest Journal Update

Released

Well, Evelyn had a difficult recovery today. She had nausea and stomach pain from the anesthesia and did not feel well. They tried two different medications and neither one controlled her nausea. She was unable to keep anything down. We started to worry that she might not be released today. However, they ended up giving her a large dose of fluids and she took a nap. With the passing of time and the fluids she improved.


She turned back into her cheerful, chatty self. She has been able to keep some graham crackers and water down. We were released and are back at the hotel for the rest of the day. We fly home tomorrow as long as there are no complications. We will continue to watch her cath site for bleeding or infection.


Thank you all for thinking of us and praying for us. A special thank you is sent out to Nancy and Jerry Clausen for caring for August this week and to Debbie Gjerde for taking care of our dog this week.


We are so blessed to have such great results. It is hard to believe that she is healthier than she ever has been in her entire life. She is a miracle and her PH journey brings hope to so many other families whose children have PH.


-Melissa