The children's grandmother, as a respitory therapist, would stand outside of Shawn's room watching his monitor with such a sad look. I didn't understand why she was so concerned. Ignorance really was bliss.
Walking into the unit on day 4, I immediately say alot of activity in Shawn's room. Dr. Legras, another pediatric cardiologist standing over Shawn. I began to walk quickly to his room and was stopped by a nurse. I reacted like a mother bear would, when you get between her and her cub. Not my finest moment. I was told to go wait in the family waiting room with George. I was angry and frustrated, I had no idea what was going on. Poor George was stuck in that family waiting room with me. Dr. Legras met us and explained that the "shunt" that was placed in Shawn's heart had clotted, very little blood was passing through. The "shunt" is made from Gore-Tex (soft plastic) and provides blood flow to the lungs. It links the aorta and the pulmonary arteries which lead to the right and left lungs. Once again, very little of Shawn's blood was being oxygenated and he was on his way back to surgery to have a second shunt placed.
Back to Square One
August 23. 1998 Shawn's second surgery, a left thoracotomy and placement of the second shunt from the left subclavian artery to the left pulmonary artery. Instead of going through his sternum, they did the surgery right under his left armpit.
Shawn improved so dramatically, and so quickly after this surgery, we were amazed. His breathing tube was removed 2 days later, a HUGE milestone. Our excitment was short lived, he was reintubated. He remained on the vent with EXCELLENT right ventricular function, moderate to severe tricuspid insufficiency, increased shunt flow, and non-receptive atrial septal defect and a small left pleural effusion. He was on heavy doses of anti-biotics, because of the surgeries and a foreign "thing" had been placed in his heart (the shunt). Funny thing about the shunt though, after the surgeries we were given a card describing the shunt and where and when it was made, model number etc. - in case of a recall. We thought that was kind of funny.
September 1, 1998, my baby sister's birthday, and the day we said GOOD-BYE to the vent
Shawn was taken off of the vent - no more breathing tube. I was standing over Shawn when Dr. Dave came in, and examined Shawn. I had gotten so used to bad news, that when I saw him, my facial expressions must of been obvious. Dr. Dave, said, "What? I just want to let you know that you should book your tickets home, those last minute fares are expensive." I cried, and we were on the phone to Alaska Airlines before he had left the room.-Shawn was then GRADUATED out of the PICU onto the floor within 45 hours. Graduating out of the PICU was amazing, one of our favorite nurses, Diane, was taking care of Shawn that day, and understood our excitement. After we made it out to the floor, a sweet, stuffed puppy appeared on Shawn's bed. A gift from Diane that remains in Shawn's room today. Our new battles began. Getting Shawn to eat and gain weight. Because he was so weak, he was unable to nurse or suck on a bottle for any amount of time. After getting onto the floor, Shawn was taken off his monitors at times, and no longer had IV's, yet when we were holding Shawn, we wouldn't move from his bedside, still cautious of the lines we had become so accustumed to. A nurse came in, realized what we were doing, and said, "You know, you can walk around with him now." We walked down the hallway, carrying our son. To anyone else watching, it was nothing, to us, it was remarkable. We moved some things up to the hospital and slept in Shawn's room with him.
What were we thinking?
On September 4, Shawn was given a "pass" that allowed us to leave the hospital with him. I had filled his prescriptions at the pharmacy downstairs (at that time, he was on digoxin, lasix, captopril and baby aspirin) and we lovingly wrapped him up in his new carseat and stroller that we had just bought at the nearest Toys-R-Us. We began to walk down the hallway, telling everyone we'd see them in the morning and then walked faster, and faster, so sure someone would stop us from taking him. Once outside of the hospital, we noted that it was the first time we had ever had him outside of a hospital.
We spent the night in the Mickey D house, with Shawn tucked between us.
Back to the hospital in the morning for x-rays and an exam. Once again, he was given a pass to leave with us. Our flight home was scheduled for the next day, September 6th. So we rented a car and drove about 2 hours south to Eugene to see George's biological father, George Kincheloe and his wife. This would be the only time that Shawn would see his grandfather, George Sr. Suffering from cancer - without telling anyone - he would pass away December 30, 1999. We got there late, stayed the night, and had to leave early in order to make our last appointment, and to be formally discharged.
Back in Portland, we saw Dr. LeGras for his last appointment and for the OK to fly him home. When asked what we did with Shawn, we told him we drove to Eugene. The look of horror on his face cannot be described. He told us we were crazy, there are no hospitals between Portland and Eugene, anything could've happened. What were we thinking? Apparantly we weren't. But, like I said, that we the only time George's father ever saw his grandson, it was important to George and everything turned out ok. After our scolding, we began packing everything up, and went to the airport WAY too early, so excited to go home and reunited with the girls who went without their mommy for WAY too long. Clearly the longest plane ride in history.
