Rylee update!! Its long and not very pretty! Thursday we went home! But it wasnt as fabulous as we had hoped. She continued to throw up constantly, had new tremors in her face, and ripped out her NG tube. That was only part of the stress. She was up every 2 hours angry and wouldnt sleep. Friday: we had our first clinic apt. We did the blood draw which surprisingly was really fast. Then went to see our team at the heart center. She continued to throw up, while there, so we re scheduled her meds to reduce the volume she was getting in hopes to reduce the vomiting episodes: she slept great that night! Saturday: she threw up constantly ALL day. I was on the phone with transplant all day! She was exhausted! At 4 pm I gave her, her multivitamin which is green. She immediately threw it up. Then at 6 threw up again with a tint of green but now chunky, and again at 8pm by 9 pm we had already stopped her feeds and had started pedialight, but she still didnt handle it well. We came to the Emergency Department at PCH at 9:30, finally at almost 7am we were brought upstairs to the icu. The delay was only because her labs and X-rays were clear and we didnt know if we should keep her or let me take her back home. Sunday: during rounds I had asked for an upper GI with a small intestine follow through. This is just pushing dye into her tummy, watching with X-ray and seeing how the dye goes through her intestines. Remember her intestines are backwards and there is always a concern for them kinking off and causing life threatening damage. She was originally scheduled to have surgery in August but she had gotten to sick. Then the plan was to have the surgery 6+ months post transplant to avoid complications. She was also dehydrated, and loss a significant punt of weight from Friday to Saturday. After the upper GI, I was swarmed with drs. There was much concern that Rylee had a obstruction in her intestines. We were doing tons of X-rays, and abdominal ultrasound, and getting labs to prepare her for emergency surgery on her intestines. With further looking it was decided that there isnt an immediate instruction but that she will need surgery soon, but as of now we want her to gain a little more weight, get her lungs healthier, and more healing time from transplant. She has not had a fever at all, we have had to poke her constantly to get labs because she blows her IVs instantly, she was seriously dehydrated so she needed in fluids. We started her feeds and if she throws up we will have to push her feeding tube farther into her tummy. Were hoping to get some good weight curve, and proceed with scheduled surgery on her intestines (LADDS) in the next few weeks. If she continues to vomit, not hold meds down, loose weight then we will have no choice but to have emergency surgery. We have also decided to place a G-Tube in her stomach to feed her and take the one out of her nose. Its been a crazy weekend! I so glad we didnt have to rush her to the OR but Im dreading knowing soon we will be sending her off yet again for another invasive surgery. Its so not fair! Every single time she starts to progress she gets sick again! I just want to take her home and enjoy her first holidays! That being said we are still so grateful to even have these concerns! Please keep our family in your strong prayers! And as the holidays start coming continue prayers for our precious heart heros family. We are so blessed to have the option of spending the holiday with our family, even if it means being in the hospital.
Posted on: Tue, 25 Nov 2014 06:13:01 +0000
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