Hallie's Surgery

About a month ago, we went to Salt Lake where Hallie had surgery. They took out her central line and put in a more permanent port. It is completely under her skin and is accessed (by me) once a week with a needle. There is tubing attached to the needle and that remains in place for 5 days, under a dressing, to be used to give her nutrition. It allows her to bathe and swim, hopefully giving her a little bit more of a normal life.

Surgery was anything but smooth, with the surgeon having to try 3 different times to get it in place. None of her veins return to her heart normally, so it makes it hard to get the line in to the right spot. She lost quite a bit of blood and what should have been an hour or two recovery, turned into 10 hours, with us not sure whether we were going to be able to take her home that night. She required quite a bit of pain meds (they found one that she isn't allergic to, which is really nice!) and her oxygen levels were not great. It made for a very long day and a longer recovery.

We returned to the hospital a few days later for tests. She was supposed to have a tube put down her nose, into her intestines and contrast put through. She has had this done numerous times, and while it is not the most pleasant thing, she usually handles it fairly well. This time they couldn't get her intestines to accept the tube, further evidence of how poorly her intestines are functioning right now. When they place the tube, Hallie is in a good amount of pain. They tried for 45 minutes to place it, before they tried to put water through it. She ended up throwing it up immediately. So we moved on to plan b, which was to put contrast through her feeding tube over 2 hours and then do the scan. It's not as effective, but would hopefully show what needed to be seen. It caused her so much pain! Mickey Mouse was at the hospital, so they found us a wagon to take her around in, but she really wasn't to impressed. She said hi to him, but then just zoned to try and get away from the pain. She threw up about 20 minutes before she was schedule for the test, but they went ahead and did it any way. The radiologist feels like there is scar tissue that has built up along all 30+ of her incisions and it is not allowing it to move the right way.

I have watched her continually going down hill. She is eating less and less, her pain is increasing. They are going to increase her TPN to try and make up the difference. The more TPN she is on, the harder is is on her liver. Saturday night, she was up throwing up all night until we turned off her tube feeding. She has been in so much pain that she won't even move. We had to take her off her meds yesterday to prepare her for the tests next week in Cincinnati, but with her struggling before we took her off, we are very concerned for her. We had to put her on a liquid diet a few days ago, which has alleviated some of her pain, but it is not a long term solution.

My heart is breaking. Watching her suffer like this is the hardest thing I have ever done and I am so scared that I am going to lose my daughter. We are quickly running out of options. We are hoping and praying like we never have before that these tests in Cincinnati will prove that it is scar tissue. It would require doctors to open her abdomen up and try to clean it out, which is extremely risky for her, but it might give her a fighting chance. If they can't prove that is what it is, or the can't remove enough scar tissue to help her intestines function better, our next option is likely an intestinal transplant. They don't have great survival odds, so we are fighting to keep her from getting to that point.

Please, please, please keep her in your prayers. Please help spread word about her and ask your family and friends to keep her in their prayers. We desperately need a miracle right now.