Surgery Stay Day 28 Lower bowel study

Once again, Ariauna had a rough night. I keep hoping one of these nights she might get a break and get a good night sleep. Shortly after she went to sleep for the night she started to moan and groan that her tummy hurt. It lasted pretty much all night. I am physically and emotionally drained. I can not explain how my heart aches for her, it is so hard to see your child hurt and suffer and know there is nothing you can do for her. The surgical team came in this morning and talked about the rough night Ariauna had. It is so hard because when she is not on the feeds, she is happy, and feels pretty good. But every time they start the feeds, she gets sick to her stomach, complains of pain and the feeding tube formula is coming back up in her NG tube (suction). The surgical team is not even sure why the feeds are coming up into her stomach because the feeding tube is going straight into her intestines. They just told us they were holding the feeds at 20 for now and will do the x-ray in the next few hours. They came and took us first thing this morning for that x-ray and shortly after we got back Dr. Soukup came in and told us that the x-ray looked fine, that the tubes were where they are suppose to be and that there are no other signs of problems. She is still confused as to why the feeds are backing up into the stomach. When they started the feeds on Monday they actually left her on the NG tube which has helped this time. Even though she feels sick to her stomach and feels like she could throw up, she mainly gags and has a horrible reflex but most of the time nothing comes out. Dr. Soukup ordered a lower bowel study where they will go in and inject some barium into her feeding tube that will go directly to her intestines and then they will watch what it does and take pictures through out the study to see the barium go all the way through. So it wasn't long after we got back from the xray that they came to take us for that. I was able to go in with her and the radiologist talked to me the whole time and explained what they were doing. Sure enough as soon as he started squirting barium down her tube it started going into the intestine, but then immediately started backing up into her stomach. They had her roll on to her right side and it did help to push things down a bit. No one can really answer why it is backing up into her stomach. After the original study he told us not to put her back on suction for an hour until we got the next x-ray done. We barely got upstairs when Ariauna said to me "You can either put me back on suction or I am going to throw up". Sure enough not even 5 minute later she had thrown up a lot of barium. We spent the next several hours going down every hour for another xray to watch it go down into her system.We did about 4 x-rays and they will do one more in the morning to make sure it went all the way down and through. We did have a few visitors today. LaVon Hatch came up to visit and to get a picture of Ariauna and I together. Tomorrow night is the Mother Daughter Activity Day Talent Show. Ariauna is so upset she is going to miss it. She was looking forward to playing one of the songs she has learned on the piano. She missed the Father Daughter party the weekend we were admitted and now she will miss this one. I feel so bad for her that she is missing out on things and will continue to miss out on a lot. Brent and Karen King also came up to visit us again.They have been so good to come see us a couple of times a week. We didn't get to visit with any of them very long because we had to keep leaving for the x-rays. Ariauna did get a short nap in and then Dr. Soukup stopped by to talk to us about the test. They are still a bit confused as to why her stomach is having such a hard time. It could just be in needs more time. Her stomach was so small from being so sick for so long, and then with surgery sometimes it does just take it awhile. They started her back on foods and will start back at the 20 they ended on this morning. They are also going to start Erythromycin antibiotic that they sometimes use to make the stomach contract and a lot of times it will help push things through. It was not long after that daddy came up with the kids. Ariauna was so excited to see them all. We had not seen them since Sunday and we had not seen Austin for a week because of his trip to New Mexico. We enjoyed some time together as a family. We played the card game Garbage, did puzzles, and colored. They all had to leave to go home and get ready for school and work. Ariauna spent some time texting her friend Meghan Mason from school and then we settled down for the night. She took her last walk of the night and they weighed her, she was 45.76 so she has gained a little bit. Here is hoping for a better night tonight!

        Getting ready to start the lower bowel study

                     lower bowel study

             Austin, Jaxon, Ariauna and Sadie