Lindsey's blood pressure was very high for a baby. They had her on blood pressure medicine her entire life. It would seem a bit more stable in the hospital but a few hours after her medicine, it would go right back up. Even in her sleep. By the time she got to go home, they finally got it to an 'acceptable' level but was still quite high for her size. That seemed to be the best they could do.

Her Grandpa Wixom, Heather’s dad, sat up with her night after night, comforting her, holding her, just being there with her. All of us were so relieved that he was able to take care of our angel for us when we could not be there. He knew just the right questions to ask and stayed with her through most of her procedures.

They tried to give her breast milk through an NG tube that bypassed her stomach, under the presumption that it could force the food through and break up what was possibly a webbed bowel. That didn't seem to work so Lindsey had her first surgery at about 2 weeks old. It was for bowel obstruction. They transferred her from KU to Children’s Mercy Hospital. That was her first ride in an ambulance.

After her first surgery, they transferred her back to KU again. The first thing they did at KU was insert what is called a Broviak, a main line into her artery through the chest. This was a preventative as she had very small veins and they couldn’t get an IV in at first. In fact, they were feeding her through her umbilical cord at first as they were unable to get a line anywhere else, after much searching. They thought this had caused a blood clot as the blood pressure in her right leg was practically nonexistent. That side of her body was always pale. They thought she had an aortic valve problem when they ruled out the blood clot. Then they ruled that out as well. They didn’t have any answers as to why her blood pressure was so high and why her leg wasn’t getting proper circulation. The high blood pressure eventually caused her to hemorrhage near her kidneys. They did get that to stop eventually though.

The surgeon was still of the opinion after the first surgery that her bowel was webbed and in addition to that, her appendix was on the wrong side so he took it out, just so she wouldn't have problems in the future. He said that was the smallest appendix he had ever seen. Of course Lindsey weighed only about 3 lbs.

They tried to feed her again but to no avail, her food still wasn't going through her intestines and bowels properly. The surgeon said to wait until she got bigger to do the second surgery. So in the meantime, we transferred her back to KU. This was her second ambulance ride.

When she finally got up to almost 5 lbs., she went back to CMH and had her second surgery. This time, they thought it really had been a success. Three days after the surgery, Heather was able to give her a bottle for the very first time. But, by midnight, they had to remove it from her stomach as it wasn't going through properly still, coming out her nose yet not aspirating; and her blood pressure was still high.

So they went back to doing what they had been doing all along, feeding her through an NG tube and bypassing her stomach. Doctor after doctor would come in and check Lindsey, yet no one really had any answers. After time, they once again tried to force the food through to see if it could push the obstruction out or open the web. But again, it was unsuccessful. She still had very dark green bile that they had to suction out every few hours. I stressed to them that through extensive research, the incidence of reflux in CdLS kids was practically the norm and finally, one of them listened. Her name was Deb Winburn. She allowed me to vent and she agreed to call the foundation and speak with the GI doctor about the bowel obstruction. She understood just what we were going through, she has an autistic daughter starting kindergarten. They told her at one time that her child would never attend school. So I knew she REALLY did understand how we were feeling and would try to help as much as she could.

After what seemed like an eternity, they decided on yet a third surgery. This time, they were going to do a THAL Fundoplication as well as insert a G-tube. They also felt Lindsey had pyloric stenosis so they did a procedure called Pyloroplasty. During the surgery, they came a little bit too close to her spleen. They called it a splenic capsule tear but they mended it and she seemed to heal fine from it. I found that out by accident, reading her chart. No one told us about the torn spleen.

This surgery took many hours. But when the surgeon finally came out, he had a big smile and thought it was truly successful this time. But, as with all of her previous surgeries, she was plagued with DESATS for the first few days, sometimes a week afterward. Within 3 days, they started feeding her Pediasure (pre-digested milk) and indeed, it seemed to be successful. She still needed her blood pressure medicine and Cisaprive to help her digest her food but all seemed well, she was actually digesting her food now.

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