Join Us in Giving Her a Breath of Freedom

As some of you know, Steve and I have a 6-year-old child in our care who recently underwent open-heart surgery. This sweet girl had an unusually large hole between two chambers of her heart (a significant atrial septal defect). This defect was in addition to extremely high pulmonary hypertension. She went to the hospital on Nov. 26th, and doctors determined they needed to lower her pulmonary artery (PA) pressure before it would be safe enough to do surgery. Unfortunately, they could not get her PA pressure into a safe range for surgery. She was intubated and placed on ECMO (life support) in late December, and on January 16th, it was determined that despite the very high risk of surgery with PA pressures as high as hers, her only shot at life was to undergo open-heart surgery. We didn't know what the outcome would be. There was a chance she would not survive surgery, or that she would, but her heart would not function well, and she'd have to be on a heart pump (extending her recovery in the hospital by MONTHS). The best outcome we could hope for was that her heart would pump on its own and be safe enough for her to recover without a pump, giving her the shortest recovery time possible (still a few months).

We are happy to report that the surgery was a success (she's a fighter and didn't need the heart pump!) and after almost 6 months in the hospital, we brought this sweet girl home to be reunited with her brother (5 years old) on May 5th. They say it takes a village to raise a child, and today, we are in need of that village. Insurance has been amazing and covered her care well; however, she does need significant oxygen support and probably will for some time. Insurance covers one concentrator for the home and tanks for outside the home, but with the level of oxygen she needs, she burns through these tanks fast. Steve and I get nervous taking her on outings for fear that the tanks and back-ups will empty. Also, they're big and too heavy for her to carry on her own. Though portable concentrators exist (no tanks needed), they are not covered by insurance. Basically, insurance covers what she needs to live but not what she needs to have a life. This is where you come in. Anything you can donate will go toward the purchase of a portable concentrator (strong enough to support the level of oxygen flow that she requires, aka the most expensive option on the market) and a back-up battery (doubling the amount of time we can be out and about with her). The unit will also plug in, can be used while charging, and has a car charger option. In other words, your donation will purchase freedom for this little girl, who has spent the last 6 months dreaming of going to the park, seeing Legoland, and experiencing all this big world has to offer. Any funds donated beyond her equipment needs will be donated to Ronald McDonald House Charities. Their assistance allowed us to have family with her at the Children's Hospital for all those many months.