In early 2002 Kinsley had started swelling a lot. She was then diagnosed with Protein Loosing Enteropathy, or PLE. This is where the proteins are not absorbed right by the body and her immunoglobin levels that fight off infection were low. This was all due to the pressures in her heart being too high from the last surgery. Little did we know that there was no cure for this and not a very high survival rate. Despite the odds Kinsley did well with only occasional visits
to the hospital for Albumin and IGG infusions for about 3 years. Then the infusions became a must daily and we had to put in a central line. She had to come home with it and I had to learn everything from cleaning her lines to prevent infection, to giving the infusions, to mixing the meds to give by IV, to taking blood pressures, to inserting catheters in her leg for her heparin shots for the swelling. Kinsley just refused to let anyone else touch her. With everything she had to endure she never once complained.

Kinsley would be in and out of the hospital a lot during the last year of her life. She contracted several blood infections after being in the hospital, which every time she had them you didn't know she was sick until she was deathly ill. Kinsley had been septic with two of them already. We went to the hospital to have some normal GI tests ran and routine blood work done. While we were in the lab she spiked a temperature of about 101 degrees. I took her on down to the ER and waited on her blood work to come back, and they went ahead and did blood cultures while we were in there. Her calcium and potassium came back fairly low, so they admitted her to get her electrolytes back in line. The blood cultures came back negative, and then they were pumping her full of all of this fluid and decreased her diuretics because they thought she was dehydrated. Needless to say she put on 14 pounds of fluid, which really set off the PLE and that affects her urine output. She became very sick about a day and a half later. She wasn't getting any better and they finally checked for yeast in her bloodstream. That came back positive and they told me that it wasn't good and could mean months or years of IV antibiotic treatment to cure it. Her body was showing every sign for days of becoming septic. Then finally the yeast cut off the blood flow to her gut and lower organs, and her blood pressure bottomed out at 17/21 (which they say is physically anatomically impossible and her still be alive), but she was alive and awake and talking and begging everybody for something to eat or drink. The doctors in the ICU thought that was a good sign. She made it through the first night in ICU and the next day, but by then they were having to make her blood pressure. I chose to intubate her and after they got the tube placed, her father and I went back to see her. I took one look and I knew that Kinsley was already gone spiritually. After everything continued to get worse we chose to take the respirator out. I didn't want her to pass without me holding her as she made her crossing. Everyone told her how much they loved her and her favorite kids gospel CD was playing in the background as we hugged her, held her hand, and kissed her goodbye.

http://www.kinsleytaylorhoward.memory-of.com