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Brianna's 2nd Birthday |
Her 1st surgery (the Norwood) was done on 7/10, when she was 6 days old. Her surgery lasted 17 hours. They tried twice to get her off bypass. We didn't think she was going to make it. They put her on ECMO for 5 days to give her heart a rest. Her chest was open 10 days before they could close it. Then we had trouble getting her off the ventilator. The nurses said she had her own path of recovery and she wanted to do it her way.
Finally at 7-1/2 weeks she was on her way home. She had a NG tube, apnea monitor and oximeter. She was on 5 meds--Lasix, digoxin, captopril, Zantac and baby aspirin. She also had to have special formula (Portagen) which we had to order at the pharmacy. It was scary but good to have her home.
At 3-1/2 months she quit eating, started losing weight and was pulling at her ear. We thought she was getting an ear infection, so we went to the Ped. He checked her and sent us straight to the ER and called her PC to meet us. She was diagnosed with coarctation of the aorta. They tried to open it with angioplasty, but it was too narrow. While waiting for surgery to repair her aorta she developed a clot above her shunt. We almost lost her that night. She was stable the next morning, so they did emergency surgery to repair her aorta and did the bidirectional Glenn so they could remove the shunt. This time she was in the hospital for 6-1/2 weeks. She came home 12 days before Christmas. Brianna was on a fat-free formula that we had to get from the hospital, it costs $96.00 a day. She was only on it for a few weeks and the insurance paid for it. We were lucky.
In January she started eating cereal and baby food, so the NG came out for good. Mom was happy, she was tired of putting it back in 2 or 3 times a day. Brianna pulled it out every chance she got. She loves to eat. Since February she has gained 7 lbs. The doctors are all very happy with her.
The PC wants her to be 30-35 lbs before he does the Fontan. She is a very HAPPY little girl. She will be 1 year old soon and weighs 17 lbs. She is trying to crawl, but uses her feet instead of her knees and leaves her head on the floor. She prefers to walk around the furniture. She say Ma-Ma, Da-Da, Na- Na (Grandma) & Bye-Bye. We still see the PC and pediatrician every 6 weeks.
October 5, 2002 Update
Brianna had surgery on Aug 28, 2002 to repair her aorta again. The patch they used to repair her coarctation at 4 months old had calcified and she developed another coarc. The doctors tried to fix it with angioplasty on June 14, 2002, but it didn't work. They were able to do angioplasty on her LPA at that time and another narrow artery that they found during the cath.
This was her shortest hospital stay. She was out of the ICU in 3 days and home in 6 days. Four days after surgery she was walking up and down the halls of the hospital. We couldn't keep her in the room. They would page her when they wanted to do her vitals. We still have to go through the Fontan sometime next year. Her surgeon wants her to weigh between 30-35 pounds, but he would also like have about a year between surgeries. She is already back to her normal little wild self.
