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.

Wheezing

Addison had another upper GI series done last Friday and she vomited later that day. She vomited 3 times on Saturday but none on Sunday. She kept us up all night coughing so this morning I called and got her an appointment with her pediatrician. She was wheezing on her right lung so a chest xray was ordered. The results were the same as her last chest xray she had taken in March when she was admitted to the hospital for 3 days. Dr. Guidroz said she thinks Addison is a chronic aspirator. She said since she is just wheezing on her right lung it may be a swallowing problem, that when she swallows some is going into her lungs. She ordered another test, her nurse will schedule it and call me. Addison was given a breathing treatment in the office and sent home with her own machine. She also prescribed a steroid for 5 days, and a new nasal spray to use everyday. Addison is already taking a daily inhaler to prevent wheezing. Wow is all I can say. I know I am not a doctor but I am confused. First because why wasn't a follow up chest xray ordered when she was discharged in March to make sure it was cleared up? Second because when she was prescribed the daily inhaler in May it was because she was wheezing, why wasn't a chest xray ordered then? Dr. Guidroz is also concered about scarring in her lung since it has been there for so long and all the radiation she is being exposed to running all these test. Addision vomited twice this morning and 2 more times on the way home from the doctor's office. We have decided to just keep her home and take her out of daycare. We are paying each week and she usually only goes 3 days at the most. Especially with winter around the corner, she is just to fragile to be exposed to all those germs. She has only been going since March. This means I will be pulling all nighters and working every weekend. But I feel like we have no other choice. Addison will be fitted for orthotics on Friday. She has to have her feet casted and then the cast sawed off. She screamed last time so Tre' is definetly coming with me this time. Please continue to pray for Addison and our family. Me and Tre just want answers and our little girl to be able to enjoy life.

Answers Finally!

What a week! We took Addison to the circus on Sunday. She had a great time. Maw Maw Sheri and Paw Paw Pete spoiled her with all kinds of treats. She started coughing and gagging and the woman sitting in front of us turned around and said "It sounds like vomiting is next." The little boy beside her then turned around and said "Don't throw up on me" and gave Addison a dirty look. I was shocked. I just told her she has bad reflux from a birth defect and it causes her to cough. But I was furious. Addison fell asleep a few minutes later and missed the rest of the circus. I thought about saying something else to them but I just kept my mouth shut. I know they do not know our situation but it still hurt me. Addison vomited Sunday night and 4 times on Monday. Tuesday she had her weekly therapy visit. Wednesday I received a call her lab work was abnormal and needed to be redrawn STAT because of her potassium level and her heart defects. I had the order faxed to her pediatrican here in Louisiana. It was their second day on electronic medical records and we waited 1 1/2 hours just to get her registered for the labs. This was her 3rd time in 12 days to have labs done and she didn't cry at all. Thursday she had her 6 month follow up with orthopedic about her foot pronation. He ordered her orthotics which our insurance does not cover. This pair should last a year unlike the last pair that only lasted 6 months. We were offered a cash price of $400. We also have to buy her new shoes to fit the new inserts in. I took her to Chik-fil-A after her appointment since she wouldn't be able to eat after 1 for her EGD scheduled on Friday. She ate breakfast there around 10 and did not even ask to eat again the rest of the day. She did drink some sprite and eat 1/2 a popscicle. Fasting did not even phase her. We arrived at the surgery center at 5:45 am to get her checked in. She is such a big girl. She did everything she was asked to except wear the hair cap. Once again she did not shed a single tear. The nurse said when she woke up and saw her IV she told her to take it out but no tears. The EGD showed scar tissue from her last surgery has caused adhesions and narrowing. Dr. McNair was able to get the scope through so it is not as bad as it was when she had to to have surgery. An xray has been ordered to see how much scar tissue there is. It also showed her esophagus has ulcers and is raw from refulx and vomiting. Biopsies were taken and also from her duodeum which was inflamed too. It was explained to us her stomach works so slow food just backs up and then she vomits it. Her reflux is so bad it is causing her to aspirate and cough. She was coughing so bad after she woke up she was given a breathing treatment in recovery. She was prescribed a medicine called Domperidone to help get her stomach moving. It is not FDA approved in the USA so we are unable to file our insurance to have it filled. We were able to pay cash for the first prescription and if it works we can order it from another country for less money. We researched it and it's mainly used to help women lactate and it is not FDA approved becuase it is released in the breastmilk. Dr. McNair said he can order it for us from New Zealand but the pharmacist said his wife also takes it for gastroparesis and she orders hers from Canada. It does not have neurological side effects like the Reglan does. It comes in a capsule so we have to cut it open and we are mixing it with milk and giving it to her in a syringe. She takes it 3 times a day (30 minutes before a meal), Prevacid twice a day and her QVAR inhaler is 2 puffs once a day. We have elevated our bed on top of bricks to help with her reflux. If this does not work and she slides down our next option is to get a hospital bed. It doesn't look like she will be out of our bed for a while. We are just to nervous about her choking on vomit or getting aspiration pneumonia again. I am a wreck about the scar tissue already causing narrowing. Her surgery was not even 7 months ago. I am not sure what the plan is to do about it. Xrays will show how bad it is and we will go from there. Please continue to pray for her. I hope this week is less eventful for us.

More testing

Addison has continued to vomit since my last post a few weeks ago. She was vomiting once or twice a day while taking Reglan with the Prevacid. We had night after night without sleep. I called Dr. Alberty on July 23rd and he was out of town. I broke down in tears while talking to his nurse. Exhaustion and worry had now taken over. Dr. Albery's partner called in another medicine to take with the Reglan. I had the medicine filled but decided to wait for her to vomit again before starting it. She went 2 days without vomiting. During this time she was complaining of headaches, she wasn't sleeping and had dark circles under her eyes, she was irritable and not at all acting like herself. Tre' and I decided to stop the Reglan completely, it wasn't preventing the vomiting anyways. I have requested copies of all her medical records so we will have everything ready for our next move. I decided to call Dr. McNair to get a second opinion about her gastroparesis. Dr. McNair was the original GI she saw last November, whom found her stricture. But when she became severly sick (vomiting over 20 times in 6 hours) over the Christmas holidays he was out of town and our pediatrician referred us to Dr. Alberty and then Addie had surgery and we have not seen Dr. McNair since. He is a very busy doctor so I figured it would be months before we could get an appointment. To my surprise Addison was given an appointment the next business day. What a blessing. I explained everything she has been going through and gave him a list of the days and how many times she has vomited since her surgery. I also showed him a picture I had taken. Addison had eaten a red apple and vomited it 6 hours later. It was all chunks of apple I had to rinse off the towel and I took a picture of it in our sink. I know, it sounds gross but the apple I had cut in tiny pieces had not digested at all.  Dr. McNair ordered more labs, a stomach emptying test and an EGD. I explained to him I had asked Dr. Alberty for a test to watch food go down months ago and he told me she didn't need the test because he knew she had a slow stomach by what she vomits hours later. Dr. McNair said he needs to know how slow her stomach is and it needs to be documented. I am so very happy we got in to see him so soon. I feel much better now that test are being ordered to give us answers. She has had the labs and the emptying test done but I have not heard the results yet. The EGD is scheduled for this coming Friday. (this will be her 3rd EGD in 8 1/2 months) I was confused by the emptying test because they gave her a scrambled egg to eat and to me that seems like it would be easy to digest because it is soft. But I am no doctor. She started feeling better and went 5 days without vomiting but started back again last night. This week we have therapy on Tuesday, a follow up about her feet with Dr. Frierson her orthopedic on Thursday and the EGD on Friday. Please continue to pray for her and her doctors.

Here we go again

Hi everyone! I promise I have thought about updating the blog several times a day but I just have not had the time. In the last post I mentioned we were planning to take Addison to the aquarium in New Orleans. We did make it and we had a great time. Addison had her face painted like a blue and white butterfly.  I did get teary eyed when we were looking at the frog exhibit. There was a window you could look in and see what goes on behind the scenes. There was some frogs in a fish tank and Addison kept asking if they were sick and what was wrong with them, were they there to feel better, etc. It just broke my heart. Here we are having a great time seeing all the animals and she is thinking about being sick. Her favorite part of the trip was the pequins which we had to visit twice and buy a stuffed pink penquin from the gift shop she named Pinky. She was even pushing Pinky in her stroller on the way to the IMAX theatre. She did not have the attention span to appreciate the IMAX 3D movie. She lasted about 3 minutes sitting in her chair and then stood the rest of the 39 minute film. The following weekend we went to the Baton Rouge Zoo. She is getting to be so much fun. I mean she is always fun, but she seems so grown up and her little personality is coming out. She has been doing awesome at potty training and only wears big girl panties at home unless she is sleeping.
Last week we started noticing her not eating and complaining of her stomach hurting. A few days later she started vomiting again. She vomited at least once a day Tuesday the 10th through Monday the 16th. She vomited twice Tuesday night in 2 hours so we gave her a dose of Reglan. We tried only giving her 2 doses a day but she continued to vomit and she started coughing too. Since she has a hypersensitive gag reflex her coughing made everything worse. We increased the dose to three times a day and it didn't help. We were only getting 2-3 hours of sleep a night because she would moan in pain and vomit usually twice during the night. We are used to the vomiting but not the moaning in pain. It looked like she was having sharp pains in her belly and she was holding her breath. I called her GI back and we scheduled an appointment. We saw him yesterday. Addison is 3 feet tall and weighs 31 pounds and 6 ounces. He said Reglan can cause stomach cramps if there is a blockage. Hearing those words come out his mouth, I had to distract myself and let Tre' do all the listening so I wouldn't lose it. I just can't bear the thought of her having another surgery so soon. He thinks she is just having really bad reflux. With gastroparesis it will come and go and since she has a slow emptying stomach it causes the reflux which causes the cough. We started her back on Prevacid and she will take it for at least a year. We are to watch her for a few days and let the Prevacid kick in. If she continues to vomit I have to call him back and she will need to do another upper GI series. All Tre' and I have ever known is having Addison sick so those few weeks she was not vomiting really made me realize what we are missing. It felt like a huge weight was lifted off our shoulders. I wasn't having to do laundry constantly, and not having to pack a few outfits everytime we leave the house. The worst part about her diagnosis is no one knows what will happen next. It is not a disease the doctor can tell us what to expect in 6 months, a year etc. Every patient is different and he doesn't know if this will be her whole life because she had the stricture for so long or if it will get better. The only thing is as she gets older she will be able to communicate and let us know what it is exactly that is hurting her.  We have to continue with her diet, limited sugar (trying only to give her natural sugars), no fatty foods (like cheese, milk shakes, burgers), no acidic foods, (pizza, spaghetti, no carbonated drinks, orange juice). It is hard to feed her because I want to give her whatever she asks for becuase she hardly eats but we have to follow the rules as best we can. I cannot explain what we are feeling. I am so grateful for our few weeks of "healthy" Addison but I feel like we were being teased. Showing us what it is supposed to be like, how easy it was and now we are back to reality. Of course we are worried about her but the question are we doing everything we can for her is haunting us. Please continue to pray for Addison and guidance for her doctors.

Bieber Fever

Hi everyone. I haven't posted in a while because I was debating on deleting the blog. I am still very upset about someone using Addison's story to profit for themselves. Lots of people have been asking about Addie so I decided to continue to post. On June 9th I decreased the dosage of Reglan to once a day. On June 12th we had an appointment with Addison's GI, Dr. Alberty. He told me to go ahead and stop the medication and decrease her Prevacid to once a day. He was extremely happy about Addie's weight gain. She was 28 pounds at her last appointment 5 weeks ago and now weighs 31 pounds. We did not schedule a follow up appointment, he just told me to call when we need him. He knows we will be back, just not when. He said gastroparesis can come and go just to keep the Reglan filled and start it back when we need to. We also have to control her diet. No cheese or peanut butter because those are hard for the stomach to digest. She absolutely loves cheese. When I open the refrigerator she will open the drawer and get cheese out by herself. Sometimes while grocery shopping she asks for cheese to eat while we shop. She is allowed to have some sugars. Mostly natural sugars found in fruits and veggies.  He said I don't have to read every single label just to completely avoid candy, cookies, fruit drinks, and to limit what we can. Her last dose of Reglan was on the 13th and so far she has done great.
Addison is still having weekly sessions with a feeding specialist. I have been putting lemon juice on her foods and she loves it. I can't explain it. It is as if she is tasting food for the first time. She will say "More lemon please." You can hear her trying to suck the lemon off the food, even on apples. She is chewing much better. She gets excited and wants to eat fast and we have to remind her to chew. Once we remind her she will start chewing but she is in the habit of stuffing her mouth so full it is like she can't wait to put another piece of food in. We just keep working with her, telling her to finish chewing her first piece and then she can have another piece. Sometimes she gets upset and she will chew once or twice and then swallow whole so she can have the other piece.
 Over the last few weeks our lives have completely changed. I am washing laundry because it needs to be washed, not because she vomited on it. Our carpets are actually dirty, and not shampooed. It seems unreal to me, like it is too good to be true. I didn't realize how badly I needed this break, not just physically but emotionaly as well. I just want to make everything better for her and erase all her memories from the hospital. She associates everything with being sick. She has came down with Bieber Fever as well as all the other young girls in the world. She says Justin Bieber is her boyfriend and he is coming over for dinner. She wants a Justin birthday party instead of Minnie Mouse. Justin has been wearing gloves on both his hands lately when he is performing and Addison said "Justin has 2 IVs." Tuesday when I put her in the car seat to go to therapy she told me not to hit her scar that Justin would be mad. I apologized but I was laughing on the inside. I even made my first purchase on ITunes to buy his music. I know, I know! I am 31 and have never bought anything on ITunes and the first songs are Justin Bieber for my 2 year old. She loves him! I want to buy her a Justin t shirt but I am scared that is all she will want to wear. I can't explain how amazing it is to see her feeling better and enjoying life. We plan on bringing her to the New Orleans Aquarium this weekend for the first time. She keeps asking if Justin is coming with us. Please continue to pray for Addison. I cannot thank you all enough. Our prayers are being answered right infront of my eyes every single time I see her smile.