Kevin and I are not complainers, atleast I don’t see us that way normally. Today we are sad and a little frustrated, but also thankful. Ady struggled at first with the feeding tube, it took a few hours for her to be comfortable and stop gagging over the feeling in her throat. About 10 last night our amazing nurse started the feed. Ady is getting a soy high calorie formula at about 36 mls or an ounce of fluid every hour. This will be worked up to 60mls or 2 ounces over an hour. When she comes home the feeding tube will be an addition to our family. She will be free during the day and hooked up to the feeding machine at night only. Ady currently weighs 11.9 kg for her height and age she should be closer to 14 kg. So that is our goal. Ady can eat and drink normally with the tube, and I pray once she gets used to it, she will be back to eating. Ady has done great with leaving the tube alone and we are thankful she understands enough to not pull it out. Bonus - the oral meds can be sent right down the tube instead of fighting her to get them in. Craziness - this morning the nurse checked Ady’s chemo level and it had gone up. We are so confused by this. Ady has not gotten more chemo, so how could the level go up. The doctors have no real answers but tons of suggestions to resolve the issue. Right now they want Ady to have a bowel movement. They feel fairly certain that this will help pass the final amounts of the chemo. The goal is to see progress on this before tomorrow or they will provide laxatives to help. Ady’s chemo level will be checked again at 4am tomorrow with hopeful progress of a downward motion. Ady is still not eating or drinking, however is starting to say she is hungry, so this is the beginning of progress. Please pray for her and our family at this time. Also, please pray for Sami, she is a 13 year old girl at Duke with Ewing Sarcoma (bone cancer). Sami always has a smile, but I can see she is struggling in pain. She is not eating and has a very upset stomach. She is at Duke getting round 6 of chemo. Sami’s dad passed away within the past year from cancer and Sami’s mom has been under serious stress losing her husband and now watching her baby girl fight. Sami did get some great news - her scans showed progress and the cancer had not spread. After 5 rounds of chemo and many days of radiation, she is showing good signs of progress.
Posted on: Thu, 23 Oct 2014 20:17:19 +0000
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