As many of you already know Bennett was admitted into the hospital yesterday. We are in transition of moving ALL of her doctors over to CHOP (Children's Hospital Of Phildadelphia). The last one to be transitioned is GI. We saw her Geisinger GI March 29th & he said that he would feel more comfortable with her care being transitioned to them since her other doctors are now there, and I agreed eventhough I REALLY liked Dr. Focht. So, when we got home that afternoon, I had called CHOPs GI department and their first opening is May 24th. Far away!
Bennett has been having ALOT of lower back, right side near her ribs/kidney and in her legs on and off for two weeks. When she started to complain I gave her 255 grams of Miralax with 64 ounces of juice too see if it was the start of another blockage, but she went potty, fine. I figured she was still okay since we had just gone to the doctor and she was clear and was going fine. The pain became more intense and her belly started to swell. I took her to the Emergency Room on April 22nd. The ER doctor told me that her kidney function was low and she has several blockages and to call her GI doctor. I explained to him that we were in transition and he said to call her old GI, so I did on Monday morning. He finally called me back on Tuesday morning and he put orders in for a urinalysis, bloodwork and belly films. I took her over to her Pediatricians office when she woke to have them done. Then the waiting game began! He called me Wednesday morning with the results and he said this was the worse she has ever been. The entire lower portion of her large intestine was completely blocked (about 8 inches in length), her small intestine and the rest of her large intestine wasn't completely blocked but it was full of obstructions, her transverse worse as well, her colon was full. He said he wanted too see her in his office at 10:30 Thursday morning for a direct admit.
Day 1 Thursday Evening -- They started the golytley at 5:30pm, gave her 300ml of mucomyst rectally. She is getting the golytely at a really high rate of 100ML an hour. Within an hour of receiving the mucomyst rectally, the obstructions in her rectum/colon came out. She was screaming in pain because it wasn't broken up. She held onto my hands and cried her little heart out yelling "Ow Ow Ow Mommy Make It Stop Hurting!" -- It took me all I could do not to beak down in front of her. She went potty once and a fair amount of what looked like muddy water came out around 11pm. Then she didn't go to the potty again. She fell asleep about midnight and slept until 6am.
Day 2 Friday -- The lab came in and checked her BPM which was in a good range, Radiology came in early and took another belly film which showed that only the obstructions in her colon/rectum came out and there wasn't must change in the rest. At about 8am she went potty and it was a great amount, she was on the potty for about 45 minutes! I sat in there and played a game with her to keep her occupied. That was the first and last time she had gone all morning/afternoon & early evening. Which isn't good! She is refusing her trays of broth, apple juice and ginger ale. I went down to the cafeteria, went to the soup counter and grabbed a bowl of the good broth from the chicken noodle soup around 7pm and fed it to her. She ate almost the entire bowl of broth for me and drank a ginger ale. Phew! I will go down each time she says she is hungry. The doctor isn't liking that she only went potty twice today. The second time she went was about 7:45pm. He said with the rate she is receiving the golytely, she should be glued to the potty. :0( I am going to ask him tomorrow when he comes in if he can give her another dose of Mucomyst rectally because that seemed to have worked really well. It broke up the mucus and everything came out easily, yes it was painful for her but it came out. It is 11:50pm and she has been sleeping since around 9pm.
I am going to get off of here and TRY to get some rest. She wants me to sleep next to her bed so I am! This chair isn't very comfortable, but anything for my babygirl! Please pray for progress! We truly appreciate all the love and support! Keep it coming! <3 Hugs & Love! <3 Goodnight!
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