Savana's Story
We had tried and waited for a baby for a very long time, and on May 23, 2005 Savana was born. Her arrival totally completed & fulfilled our lives. She was so much more than we could have ever hoped for. She was a healthy, happy and beautiful baby. As she grew she proved to have an amazing passion for life and with no inhibitions about anything. If she set her mind to something there was no way anyone could stop her. Prior to our relocation to Oklahoma, she enjoyed spending nearly every day at the water park with her friend Annie. After the move we enrolled her in gymnastics where she shocked her instructors with how quickly she was advancing.
On February 9, 2008 Savana was running a low grade fever. Through the night it continued to rise and I was unable to get it down below 102. That was the beginning of our lives as we once knew it coming to an end. The next 3 months would turn out to be every parents worst nightmare and still is to this day.
Savana was diagnosed on February 11, 2008 as having Influenza A. She started having a very difficult time breathing during that first week, and by Friday I had her back at the Emergency room. Within a few short hours our lives went into a tail spin. Savana had also contracted a virus called Human Metapneumovirus (HMPV), along with Pneumococcal Pneumonia and Staphylococcal Sepsis. She was hospitalized in the Pediatric Intensive Care Unit at St. Francis Children’s Hospital in Tulsa, OK from February 15 - April 27,2008.
During her hospitalization Savana was on mechanical ventilation for 61 days and spent an amazing 21 days on ECMO (artificial heart/lung bypass). She underwent surgery on March 11th to remove more than 1/3 of her right lung, a procedure that we would later find out had left the right side of her diaphragm paralyzed. None of the hospital staff expected her to come through the surgery considering the amount of Heparin that was in her system, let alone make it through the days to follow. While in the hospital she contracted PVL MRSA. It developed into a pneumatocele (cyst) that consumed in excess of 40% of her left lung. Everyone was preparing us for the fact that Savana would go home with a tracheotomy and on a ventilator (neither of which we were willing to accept).
On April 4th, she was transferred to St. Louis Children's Hospital in St. Louis, Missouri for the possibility of a double lung transplant. Within 48 hours of her arrival in St. Louis, they removed 5 chest tubes (leaving her just 1), by day 7 she was off of the ventilator and by day 14 her trach was extubated (and without a transplant!). Then we were told she might never be able to come off oxygen…she would later prove them all wrong again! On April 25th she was transferred back to St. Francis Children's Hospital so arrangements could be made to establish her home health care.
In addition to the Pneumatocele in her left lung (which has since turned to scar tissue allowing no gas exchange), Savana still has fibrosis in both of her lungs as well as other damage left behind from the pneumonia. The function of her right lung is inhibited by the diaphragm being paralyzed, it is actually forcing the oxygen out of her right lung and into the left.
Savana had a follow up in St. Louis on September 3rd. That appointment did not bring us the news we had hoped for. Savana would require another surgery. This procedure will pull the diaphragm away from her lung and hopefully allow it to expand and grow. She had a series of Chest x-rays done in October. They showed that her right lung only went down to just below her under arm, and her Liver was sitting behind her breast. She had another Follow up in St. Louis on February 4th, and to everyone surprise her diaphragm has started to function! There is not much movement at all at this point, but we will take every little bit we can get!
In the beginning of March Savana started going to Pulmonary rehabilitation at Unity Therapy Services in Tulsa twice a week. This therapy is to help improve her diaphragmatic and lung function. Since she began we have seen great improvement in her lung volume. She is able to blow bubbles now and she has actually begun to cough! Since we are able to produce new lung tissue through the age of 7-8 years old Savana will continue with therapy at least through that time, possibly longer.
Our mission is to raise awareness of the damage that can be caused by pneumonia. Not just to a child physically but to the family unit as a whole. Our hospital stay put us without income for over 3 months, yet household expenses still came due. Mortgage, power bill, water bill, vehicle payment, car insurance, as well as medical insurance. This is not including the cost of surviving day to day, eating, toiletries, fuel etc. As soon we returned home hospital bills started pouring in so far totaling in excess of $38,000.00 that has not been covered by our insurance. Since our daughter wasn't afflicted by a disease, but "only contracted a virus" we are unable to get help from any organizations including the American Lung Association, United Way etc. This ordeal has taken a toll not only on our family financially, but physically and emotionally as well.