The Plumbing IS Working? Or Is It?

As you all my know Bennett has been having some complications with her intestine blocking since the beginning of February. I reported the belly pains to her Dr. Kinsey (CF) and he just upped her enzymes with no questions asks and also put her back on 3 packs of Miralax a day (she was on it as a newborn). A few months went by and she was going to the potty but it was mainly just liquid. March 31, 2010 I woke her up for pre-school and she couldn't get out of bed because the pains were so severe. She stayed home that day. Throughout the day she had gotten worse. She began to throw up yellow bile. So, I took her out to the ER. They did the normal bloodwork, chest xray and CATScan. The first results came back from the CATScan and the doctor has seen something show up on the scan so he wanted to do a repeat scan. Well according to him she had appendicitis. He called Dr. Wimsatt who is a surgeon and he refused to do the procedure because she has a lung disease. At this time they had decided to transport her to Janet Weis Childrens Hospital Emergency Department. They did an extra IV of antibiotics to get her through the hour transport. My mom rode in the ambulance with her. I followed behind with my nephew. It was the longest hour of my life. We reach the ED department in Danville. They reread the scans and bloodwork and had determined she had an intestinal blockage and NOT appendicitis. Dr. Kinsey (CF) wanted her admitted immediately. They gave her an enema the following day and didnt give her anything by mouth. She was on IV Fluids only. The enema worked for a small amount. 3 days later they sent her home and changed her enzymes to CREON 12000, 4 per meal and 3 per snack because he figured the enema cleared out the blockage. On that following thursday (discharged from the hospital Saturday before Easter) he wanted her back into his office because she did not have a bowel movement. Once we arrived at the office he wanted a TWEEN 80 Enema done. He once again changed her medicine. He put her on 4 packs of Miralax a day, her enzymes and now he wanted her to take 2 doses of Fletchers Castoria daily. Things seemed to have started working for the month of April. In May she began complaining of belly pains and it was days on end without a bowel movement. So when she went for her 3 yr old physical in April, I had asked Dr. Dedeoglu (pediatrician) his opinions and what he decided was to refer her to a GI Specialist. His office went ahead and scheduled her an appointment with Dr. Focht in Danville. Well, here is where it gets really scary. At the beginning of EVERY appointment we go over her medications and he was astounded at the amount of enzymes she was taking without being pancreatic insufficient. I explained to him that every time I reported to Dr. Kinsey that her bowels were not moving properly all he did was upped her enzymes. He decided he wanted to do a Miralax cleanout the following Monday. So, over the weekend I allowed her to enjoy whatever foods she wanted. Monday rolls around and I mix up the Miralax (an entire bottle) with a quart of gatorade, then began to wait and wait and wait. Well there was no results with the cleanout. I called his office and he wanted me to do 3 doses of Milk Of Magnesia. She drank that down like a champ. Still without any progress. So I called his office once again and he said that he could NOT do the NG Tube until next week. Well at this point I was fed up! It has been 5 months and she is STILL having a blockage. I decided to pack our bags, hop in the car and drive to the Emergency Department at the childrens hospital 90ish minutes away, I figured he had no choice but to do the NG Tube and fix my babygirl. THey of course did xrays, bloodwork and a CATScan which revealed that in 3 days the blockage had gotten 3 inches bigger. Dr. Focht was once again astounded so he immediately admitted her. We get upstairs to our room and the nurses put the NG Tube in. That was the worse 15 minutes of my life. Hearing my baby please and beg for me to help that they were choking her. My mom was with me and said that all the color drained from my face and I began to sweat. I had to step outside because I began to faint. They hook the fluids up to her NG Tube at 11:30pm. Dr. Maskimack (Dr. Fochts partner) came into our room at 6am and there was absolutely NO progress. It took a total of 10 hours to melt the entire blockage. Nothing started happening until the following afternoon. Friday, July 16 2010 they wanted to do an endoscopy and pancreatic stimulation test. The results from the endoscopy revealed she has a hernia and an extra small intestine from the mucus building up in it. Also, they took biopsies and 3 of the biopsies came back showing some abnormal, which I will not find the results out until tomorrow! An entire month later. Her pancreatic stimulation test came back AMAZING. Dr. M said that her pancreas makes beautiful enzymes on its own and that he wanted her CREON stopped immediately. That was a relief but scary at the same time because Dr. Kinsey should have NEVER put her on enzymes at age 8 months. She stopped the enzymes over a month ago and let me tell you her appetite has increased tremendously. She has gained 1 pound since being discharged from the hospital. She hasnt been feeling well for a little over a week now, She didnt have an appetite, throwing up, and liquid bowel movements, so I took her into the office and she has a super bug GI Virus. Also, something else is going on because she has absolutely NO color, dark circles and VERY short of breathe with alot of junk coming up when she is coughing. Okay, so I think I have everyone up to date. I am really nervous and scared to hear what the results are of these biopsies. Please pray that for once we get good news at the doctor. I want a clear xray of her belly showing no obstructions or blockages! Pray! Pray! Pray! Xo