Surgery

This week has been hell for us. I already posted Monday so I will just touch on the recent events. Addison vomited a total of 5 times Monday and once Tuesday. Tuesday morning at 8:30 I called and left a message on Dr. McNair's nurse's voicemail letting him know about her abnormal chest xray, asking for the results of the Upper GI and biopsies from the EGD and a detailed list of the days and times Addison has vomited on the new medicine. I didn't hear back from her so I called Dr. Alberty (Pediatric GI in Baton Rouge) and Addison was given an appointment for 10:15 on Wednesday. We went to her therapy appointment and Mrs. Margaret said until the doctors figure out what is causing the vomiting her work won't help Addison. If she is still associating food with pain nothing Margaret can do with her will help. She said she can do whatever needs to be done, if she needs to help with thickening her meals, brushing her teeth, all these things she can do but she cannot teach her to deal with the pain. We woke up a few minutes after 7 and I received a text from a dear friend that three 18 wheelers had flipped and leaked at the exit I take to get to the doctor's building and the interstate was shut down. I scrambled to get us out of the house. It seems like when you are in a hurry everything takes longer. I had to give Addison her meds and breathing treatment. We walked out the door a few minutes before 8:30. I signed in for her 10:15 appointment at 10:54. Addison was very upset about being in the car so long. She weighed 31.6 pounds with a dirty diaper and shoes on. Dr. Alberty spent around 40 mintues in the room with me. He went through her entire chart, and her records from the hospital. He said he thinks it was a motility problem but the reglan fixed that. Now neither the Reglan or Domperidone is helping her so this tells him it is something else. He ordered a test that will time how long the food actually sits in her stomach. His nurse will schedule it and call me with the appointment. He believes Addison needs Nissen Fundoplication surgery and referred us back to Dr. Lopoo (pediatric surgeon). Her appointment with him is on Monday afternoon. This will be her 6th surgery, 3rd since January. I googled the surgery and everything it talks about Addison has. She has ulcers, strictures, hiatel hernia, and reflux. If you are interested in reading about it here is a link. http://www.umm.edu/general_surgery/nissen_fundo.htm Then I read about the diet she will have after surgery, here is the link. http://www.upmc.com/patients-visitors/education/nutrition/Pages/diet-after-nissen-fundoplication-surgery.aspx How can I deny my child chocolate milk? It's her favorite and how we hide her medicine in her sippy cups. He agreed with the test her pediatrician ordered to make sure she is not aspirating when she drinks. I told him about all the medical bills, constant doctor appointments and we keep getting denied for Medicaid so he had a social worker come talk to me. She said we need to file for SSI and even if we do not receive income each month from SSI since we both work, Addison needs to be declared disabled. A few hours later she called me on a 3 way call with the SSI office and I set up an appointment for August 30th to file for benefits. Once she is declared disabled she will qualify for Disability Mediciad. I had a breakdown in the office as soon as I heard surgery but now that I have read about it I am worse. It is seriously taking everything I have just to get out of bed in the mornings. Addison still doesn't sleep through the night so by the time I finally fall asleep she is waking up and then I can't go back to sleep because all I do is worry. I have several questions for the surgeon. If she is unable to vomit, what about when she gets pregnant and has morning sickness, will she be able to even have kids, what if she is a sneaky teenager and gets drunk, will she get acohol poisoning. I know I can drill it into her head she cannot drink alcohol but you know we didn't always listen to our parents and all I can picture is her drunk somewhere and me not being there to help her. The diet restricitions are numerous, no fresh fruits or vegetables, no carbonated drinks, no granola, I mean the list goes on and on. She won't be able to drink more than 1/2 a cup at meal time, she will have to eat 6-8 small meals a day...How will I give her 6-8 meals a day when she starts school or preschool. It looks like I will have to home school her which means I will never be able to work in the office. Her birthday is next month and Halloween in October. I have thought about her not being able to trick or treat incase she is recovering from surgery but now she can't eat any candy so how can I take her trick or treating? I can get away with telling her any day is her birthday and she won't know the difference. My mind has not stopped, my house is a disaster. I physically do not have the energy to do anything. When I was crying at the appointment Addison asked if I was crying because she pukes. I told her I had an eyelash in my eye but she can hear everything we are talking about so she knows the real reason. I wish I didn't have to have her in the room during these appointments. I called Dr. McNair's office again this morning since I still haven't been called back. I hope they call me back because I really want to know what he thinks about the surgery. Tomorrow Addison will be casted for her orthotics. I am so tired of driving to Baton Rouge! Four times this week and at least 2 times next week. I know I am always asking for prayers but I am begging now. Pray for our guidance as we make a decision that will affect the rest of her life and her strength to cope with another surgery.