Pay It Forward

I am so thankful for Addison's 8 weeks with no vomiting. She developed a cough and vomited 3 times last week. She started out with a fever. The next day she had a rash all over her body and then the cough started. After a visit with her pediatrician she confirmed it was a viral rash. During our visit Addison was coughing and gagging. Dr. Guidroz said she was about to start crying because she thought Addison was going to vomit in her office. She didn't start until we made it home. She vomited twice on Thursday and once on Friday. We began breathing treatments and she has slowly gotten better. I have been doing better also. I started back at Jazzercise and have not had a single anxiety attack in a month.
Addison has had quite a year. So far she has been hospitalized 3 times, 2 EGDs, 2 surgeries, 4 Upper GI series, 1 swallow study, 5 chest xrays, 1 PH Probe study, 36 therapy sessions, 92 doctor appointments and she has vomited 78 times. I am so thankful for all of your support and prayers. Now that things have slowed down for us I really want to pay it forward over the holidays. I would like to donate toys to the Child Life Specialists at Our Lady of the Lake Children's Hospital. The Child Life Specialists checked on Addison at least once a day during her admissions and went with her to preop for surgery. They brought her barbies, dress up clothes, colors and coloring books, paint and paint brushes, bubbles, etc. Bubbles are used to prevent children from getting pneumonia from laying in bed after a surgery. It is important for them to blow. When we were able to finally give Addison a bath several days after surgery they brought her a princess crown, wand, purse, jewelry and a tutu. I will never forget her laying in bed in pain but she managed to have a smile on her face. I would like to donate new toys to the hospital the week before Christmas. I am asking you to buy an extra gift for a sick child who will be spending the holidays in the hospital. Coloring books, colors, puzzles, barbies, babydolls, dress up clothes, bubbles, pillow pets, board games, cars, action figures, card games, etc. Please contact me to pick up your donation to be made in Addison's name. My number is 225-717-6102, email jrgautreau@yahoo.com or on facebook.

Party Time!

Addison has not vomited in 6 1/2 weeks!! I have not posted in a while because we have been busy celebrating. I like to take advantage of "healthy time." We celebrated her 3rd Birthday with 2 parties. It was fun watching her open her presents. She was excited about every gift. We bought her a small trampoline. We had been thinking about getting one for a while and her therapist suggested she needed one for her sensory problems. I cannot wait until Christmas so we can spoil her again. She weighed 32 pounds and 8 ounces at her wellness check up and she is 37 1/2 inches tall. Her weight is a big difference since she was 25 pounds in January. Dr. Guidroz (pediatrician) will do another chest xray in December to follow up on her lung issues. She is only currently taking QVAR, her daily inhaler. It just blows my mind that not even 4 weeks ago we were preparing for another surgery. Guess what else!!! She is potty trained and even wears big girl panties while she is sleeping. We have been on lots of outings the last few weeks. We have made trips to parks and Seward Farms. We went on a boat ride and did a little fishing. Addison mostly ate her doritos and danced to the radio. We even took her to the movies to see Finding Nemo in 3D but she only made it through the previews and about 10 minutes of the movie before we gave up and left. She does not have the attention span to sit and watch a movie. She was walking back and forth in the isle and asked to go to the bathroom 4 times in 10 minutes. We left and went to the mall for her to ride the carosel and the train. This weekend we will go to the Baton Rouge Zoo for Boo at the Zoo. Addison will be dressed as Tinker Bell. Last year I stocked up on clearance Halloween costumes and gave them to her for Christmas as dress up clothes. I think I paid $2.90 for the costume, shoes and matching wings. Go me! For trick or treating she will be a clown. The cutest clown you have ever seen because Maw Maw Vickie made her costume again this year. She has been playing pretend play practicing trick or treating. She makes me sit on the couch and handout candy to her and Tre. Then she takes a turn handing out the candy to us. When I asked her for a second piece, she said "No, that is for the other kids." She loves going to her dance class. She tries to teach me what to do, like pointing my toes, heel then step, and shuffling. I don't know why but I always get teary eyed waiting in the waiting room while she is in class. I guess I am just so proud of her. She is stronger than I will ever be. Every now and then she will bring up the tube in her nose and ask why it was there. She asks about once a week so nothing compared to how she asked after her surgery in January. I had mentioned she clawed my arm while she was getting her IV, it ended up scaring. I can't complain, after all it takes more than all your fingers and toes to count all of Addison's scars. I have been feeling better too. My depression and anxiety have gotten better in the last 2 weeks. I started going back to Jazzercise and I have already lost 4 pounds. I am concentrating better and finally feel like I can take a deep breath. Please continue to pray for Addison's health. Thank you for all your prayers because I know the only explaination for her recent "healthy time" is God.

A day of news

We enjoyed our time in Memphis and are settling back into our routine. I have lots to update so I will start from the beginning. We checked into the LeBonheur's Children's Hospital at 6:30 am on Tuesday the 18th. As soon as we walked into her room she picked up the phone and told me to call the eatman. She wanted me to order her breakfast. Poor thing knows too much about being in the hospital. Addison was given an IV. Of course she hates them and clawed my arm trying to fight the nurse from giving it to her. At first the resident doctor thought Addie could not eat until after the probe was inserted so fluids were started. After about 5 minutes they were stopped and she was allowed to eat until an hour before the probe was inserted. The probe was inserted, Addison fought a little and it came out but after another try it was inserted fully. A chest xray was done to check it's placement. The probe was taped to her face and on her back. She didn't complain. She just asked what it was and why was it in her nose. She told us she could not snore because of the tube in her nose and only said it hurt once. The hard part was keeping her from pulling the probe out. She is not "sick" so we kept having to remind her to be careful and not move to fast or step on the cords. It was removed after 24 hours and we were discharged. During our stay a pulmonologist was consulted. She basically explained to us the linear band of fibrosis was caused from the aspiration pneumonia. We are to be sure and give Addison a Flu shot every year and to keep her from getting sick as much as we can. Being born premature she had underdeveloped lungs anyway.
We picked up her 2nd pair of orthotics yesterday. They should last a complete year. Today we met with her therapist. Addison is showing signs of sensory processing disorder. We already have an appointment with her pediatrician on Thursday. We will discuss having her tested then. Dr. Black's nurse called and said the PH probe results were negative and did not show any signs of reflux. I just don't understand. She just had an EGD last month and it showed reflux and esophageal ulcers. Her 2 GI doctors both said she needed the Nissen Fundoplication surgery and now she doesn't have any reflux? Thank goodness we took her to see Dr. Black. While we where in Memphis, her surgeon called to schedule the surgery. She has not vomited in 3 1/2 weeks. The only explaination we have right now is the power of prayer. It just seems to good to be true. Everytime she makes a noise, like she is going to cough or gets choked I think here it comes. I asked the nurse if I still need to give her prevacid and she was going to ask and call me back but I haven't heard from her yet.
Thank you for all your support and prayers.

Hello from Memphis!

Let me start with good news first. It has been a full 2 weeks since Addison last vomited. She loved her first dance class. She didn't even cry when I walked out of the room. I did get teary eyed because she was acting so grown up. It was just nice to see her so happy and like a normal kid. We headed to Ocean Springs after dinner Tuesday night. We arrived around 11 pm. Woke up, showered and loaded up the car by 10 the next morning. We made the trip in 7 hours. We had to make a handful of stops because Addison would ask for a break from her car seat. We checked into the hotel and took her swimming in the pool. Next we went across the street to eat dinner at Chik fil a. She loves playing there and actually eats the grilled nuggets. She hates fried nuggets and will peel the fried parts off. Her appointment with Dr. Black was at 10 today.We had about a 30 minute wait in the room. Addison was playing doctor with us. She is so smart. She was even telling me to put the little black thingy on the thing they use to look in your ears and told me to say ahhh when she grabbed the light used to look down your throat. She always puts gloves on first too. I am telling you my little girl is going to change the world. Dr. Black entered the room and had already reviewed the records we faxed over. He does not agree with the Nissen Fundoplication surgery unless it is a life threatening issue. He said the surgery can cause problems also. He needs to know how bad her reflux is. Addison will be admitted to the Le Bonheur Children's Hospital on Tuesday afternoon. She has to be off of her Prevacid for at least 3 days before she has a PH Probe test. A probe will be inserted through her nose down her esophagus to measure how much and how often she has reflux for 24 hours. She will also have a consult with pulmonology about her lung issues during her hospital stay. We were given a referral to the FedEx Family House which is located across the street fom the hospital. They only have an opening for us to stay tonight. The Forest Spence Fund had dinner brought in for all the house guests. They even played with Addison and had an arts and crafts table set up. Besides a baby Addison is the youngest child here today. They offered to pay for our hotel stay Friday through Monday. I am so very thankful for this organization. Tre' missed a week of work during the hurricane and Addison's $400 orthotics, it has been a rough month. I only packed for a 2 day stay so we had to head to my favorite place, Target, and buy diapers, wipes, shampoo, apple juice, milk, and snacks for Addison. There is a washer and dryer here so we were able to wash our clothes. This house is such a blessing. I feel like my world has been turned upside down. I don't know why I am even feeling like this. Addison has always been sick so this is nothing unusal. I guess just being away from home. Mom is trying to get off work to stay with me but she may have to leave Sunday. If so Tre will head up Sunday evening and will have to miss a week of work again. I just don't understand how people do it. These unexpected medical expenses are killing us. But as always I trust in God and know he will provide. I pray one day we will be on the other side and can offer help to a family in need. I would love to be able to pay it forward. I will update as often as I can. Please keep us in your prayers.

Memphis Bound

Hi! We survived Hurricane Isaac. Our yard was flooded for a few days but Addison only vomited twice during what felt like was the longest storm ever. She hasn't vomited in 11 days. Last week she had her swallow study done. I have not heard from her doctor yet but the speech pathologist said Addison swallows normally without aspirating. She kept asking me what genetic testing Addison has had done because usually atresia birth defects come with other defects also. Addison has only been tested for Downs Syndrome and Cystic Fibrosis. She will have therapy tomorrow morning and her first tap and ballet class in the afternoon. After dance we will head to Ocean Springs for the night. We will leave Wednesday with Maw Maw Vickie to head to Memphis for Addison's appointment Thursday morning with Dr. Black. I am so frustrated! I requested all of Addison's records from all of her doctors on 7/27/12. I had to pay for some before they could be sent but when I was getting everything ready this weekend I noticed I have not received the correct records. Her GI and allergist are in the same office and all I received was the allergists records even though I paid for the GI records too. One of her pediatricians only sent her 9 and 12 month check up notes instead of all the records, she had seen her from 6 weeks old to 1 year. I feel like every which way we turn nothing is working out for us. I will just have to bring what I have and sign a release from Dr. Black's office so he can get the rest. I have been having a hard time with my depression and anxiety. On Friday I layed Addison down for her nap in my old bedroom at mom's house. I went in the kitchen to work. I started thinking I would not be able to hear her if she started choking or vomiting and I had an anxiety attack. My heart was racing, I could not take a deep breath or swallow. I hate that we never know what will happen one minute to the next. Later that night she was having sleep apnea and I was scared to fall asleep. I counted 8 mississippis during one pause. Please pray we get some answers from this doctor. Why has she been 11 days without vomiting? I feel like God is telling us not to do the surgery. I added a few recent pictures of Addison from this summer. I will update again this weekend when we return home.

Go Away Isaac!

In my last post I mentioned our week had been awful. It continues to still be getting worse. Thursday evening I received a call from Addison's pediatrician. I cannot say enough about this woman. The fact that she took the time to call me instead of having her nurse call. She had received the full report from Addison's chest xray. It showed a linear band of fibrosis in her right lung. She said we will know more after the swallow study results are in but if Addison is drinking and aspirating the worst case scenario will be feeding her through a g tube. Addison will be referred to a pulmonologist to address her lung. I called Dr. McNair's office again Friday morning and asked to speak to an office manager since my calls were still not being returned. I was put through to a nurse named Christine and she apologized. I told her about the latest news and she spoke with Dr. McNair and he agrees Addison needs surgery. I got an appointment with Dr. Black in Tennessee for 9/13. He is a pediatric GI and will be our 3rd opinion. Her swallow study is also scheduled for 9/13, I called to have it rescheduled and no one returned my call. We will meet with the surgeon tomorrow at 2. I will not schedule the surgery until after our trip to see Dr. Black. Right now we are stressing about Hurricane Isaac. I worry if Addison starts vomiting we cannot be without power. I need to be able to wash clothes and give her baths. Also she is on breathing treatments and I worry about her getting hot and making her cough worse. Never a dull moment in our house. I will update again tomorrow with the details from the surgeon. As always thank you for your prayers.

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.