Ann Story section #3 I hope

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had had an x-ray that morning and he x-rayed her again, he could be over exposing her unnecessarily. By this time I was not only furious, but spitting mad. I asked that the patient advocate be called in. This doctor told me he would not call her in and waist her time when it was obvious that I was telling a lie. Having been through the Munchausen issue earlier in her life I was in no mood to put up with this person. I then left our daughter in the care of the home nurse in the ER room and went to the patient advocates office myself. I was hysterical at that point, partly due to being mad and partly due to being scared. I had a little girl that was laying in the ER with 105 temperature and very sick with very low saturation's, a home nurse who was telling me I needed to get her help before it was too late, and an ER Doctor with an attitude at the helm. I explained to the patient advocate as best I could through the tears and ranting what was going on. I demanded that her pulmonary doctor be contacted who had just seen her in his office that morning, and demanded to speak to the head of the hospital. This person was wonderful! She not only calmed me down, but got a hold of the doctor who I was told by the ER doctor was impossible to contact, and got the head of the hospital on the line. Well, low and behold the pulmonary doctor did in fact back my story that we had been there that morning and an x-ray had indeed been taken, I wanted to stick my tongue out and say "See I told you so!",however he felt that she could be released with antibiotics and said if the home nurse was not comfortable than to call the agency and ask for another nurse. I was in shock! He had not come in to see her current condition, but could make that decision over the phone. The nurse that was with me happened to be our most trusted nurse and I knew if she was not comfortable, something was really wrong. She had been with our daughter for almost a year as her main nighttime nurse. I went back to explain to her what the pulmonary doctor had said and she was furious. Not knowing what to do, we took the antibiotics and drove with my daughter 3 hours home. The entire trip our home nurse didn't take her eyes off of her for fear she would not breath. She was very tired and weak and you could hear her struggle to breath. Within 2 hours of reaching home, now around 3:30 in the morning the nurse said this child is dying. I about fainted! She told me to call the hospital back and to call the genetics department and try to get a doc who would listen, and not to give up. The on call Genetics doctor told me to bring her back in. So once again we packed her up and drove the 3 hour drive back to the Children's Hospital. The grace of God was with us all the way. When we got there, they took one look at her and rushed her back, wanting to know why we had waited so long to bring her in for help. I was terrified and spitting mad at the incompetence we had met up earlier in the day, and was now ready to "take out" this nurse! I once again asked for the patient advocate person to be called in as well as the head of the hospital. Not only did she have pneumonia, but she was in congestive heart failure, and had been in it when she was sent home the first time. The doctor that we got this time was in shock that she had been sent home and the home nurse filled this doctor in on everything that had been going on. Along with the on call Genetic doctor, this doctor in the ER made sure she was admitted and we were told that her pulmonology Doctor would be in in just a few hours. I was utterly exhausted, madder than mad, scared to death, 3 hours away from home with a very ill child, no husband because he was at home tending to our son, and a now stranded home health nurse who was just as tired if not more than myself. I was in no mood for any more people with an ego/attitude problem. However low and behold, in comes the pulmonary doctor with a chip on his shoulder and mad at me for making such a big deal about the situation. It was then that we both asked for the hospital stenographer to come in and record what was being said. Basically this doctor knew he had messed up big time, and instead of apologizing and trying to give her the best care, tried to claim he was not at fault. After several hours of debating the facts we both agreed that what was in the best interest of my daughter was that we move forward to get her well, and from there on out if she was brought in again with the same issues her chart would be flagged and the head of the pulmonary department, along with the genetics department would be contacted to insure that her care was given correctly. This is when I officially received my beloved nick name of "Mito Mommy from Hell".It was during the remainder of that hospital stay that I over heard 2 floor nurses refer to me in this manner. I couldn't resist and said to them " and darn proud of it, since my daughter is still alive and wouldn't have been had I left it up to people like you!" and walked back into my daughters room in tears. Not the proudest moment in my life for sure, but at that point I could take no more! Those two nurses however after that were the nicest things to my daughter and I. Go figure!!!!

Shortly after this we had decided that no more children was the best idea for us, however it was already too late, I was pregnant again, this time with twin girls. Once again I was absolutely terrified! The doctors tried to reassure me that the chances were very slim that these children would be effected as well. I can remember thinking, Lord I am sinking now, how am I going to do any more? I had another rough pregnancy and at 61/2 months went into labor. I delivered one of the twins, who did not live, and then carried our 3rd daughter another 3 weeks. She was born tiny but strong via another C-section. She appeared to be healthy although she was watched closely until she was about 4 years old. At this time her migraines started in, as well as the muscle pain and cramps in her legs. She had a horrible time with potty training and still doesn't get the urge that she needs to potty until it is almost if not too late. She has dealt with severe issues with her skin. She would get blister type rashes, and raised itchy rashes that would cover her legs, torso and upper arms. Many doctors looked at it, but no one could figure out what was going on with her.I was told it was everything from a food allergy, to I was bathing her too much. They settled on extreme exema and told me she needed to have a heavy cream several times a day spread on the effected areas. She would scream from the stinging of the cream even unscented creams, until 5 years later we found Acid Mantle and Cetaphil Creams would not cause this side effect for her. We have used these creams 2 to 3 times a day for the last 3 years. Although her symptoms so far have been more mild compared to her brother and sister, she too was diagnosed with Mito.

We had attended our first UMDF -United Mitochondrial Disease Foundation Symposium in Philadelphia and for the first time met other parents who were going through what we had been going through. It had been 7 long years all on our own. No one had told us that there were other parents going through what we were going through much less put us into contact with them. I had been feeling so alone and that no one really understood or cared really.All we knew was our child had an extremely rare disease and we were in the fire pretty much on our own. We found out about the UMDF quite by chance as my brother had been trying to research what was happening to the kids and had come across the website and called me.

Our oldest had started vomiting frequently during this time and was hospitalized several times needing D-10 therapy and fluid. She was diagnosed with Cyclic Vomiting Syndrome. The hardest thing was getting our local ER to give her the treatment she needed as soon as we arrived. We worked with our pediatrician to develop a standing protocol that was kept in the ER nurses station, so when we came in, time was not wasted with each doctor trying to make their own diagnosis of her, after all I was "only" the mother and most often they would not listen to what I had to say about her diagnosis, even though we were on the "frequent Flyer" program to the ER. IVs were becoming more and more difficult to get in her and very traumatic for us both. I was having to feed her every three hours round the clock. Due to her suffering from hypoglycemic attacks. I kept this schedule up, plus worked full time as a teacher, took care of an infant and my son with his raging fits as long as I could, for a little over 8 months, but then I became so tired that I slept through one of her feedings and she ended up in the hospital. It scared me so much that I had slept through and had put her health at risk. It was then that we decided to put in her G-Tube so that it would not be an issue again, she would receive feedings via her G-tube through the night, and I could get some much needed sleep. It was physically impossible for me to do what the doctors were expecting of me any further. I gave it the best try I could, but I could go no further. This was a hard decision to make as I felt I had failed her as her mother, but I just physically could not keep getting only 1 1/2 hours of sleep at a time and keep going, and the insurance was not willing to pay for any more nursing care, and because we worked, we did not qualify for any State or Governmental help for nursing care much less any other kind of help. It has turned out to be a good decision for her health wise, but she has had to endure some social aspects, more recently with a boy telling everyone at the Jr. High that she had it. That was one kid I was not too thrilled with! For the most part though, her friends totally accept the fact that she has a tube hanging out of her.

My family had a very difficult time understanding the stress that having 3 ill children brings, as they live some distance from us. They even questioned at times whether we were on the right track with them, and would question what I was being told by the doctors. I felt like I was stupid or something and really didn't get it at times, even though I knew I did. I needed to have trust in the very doctors who were fighting for my kids and I felt that others were trying to break that trust constantly. I tried to be understanding with family and friends, but a little questioning goes a very long way, especially after years and years of it. It didn't seem to matter what I did, it was never good enough, or I had made the wrong decision or was asked constantly are they really as ill as all this. If I had a dollar for every time someone said to me, your kids look so good to be so sick! In other words, I took it as, your children are just fine get over it lady! I had expectations of family members that often were not met due to impossibility or denial on their part. This led to a lot of family stress at times, and my feeling very alone in the fight to keep these children around. I even dealt with some anger. This was a Genetic thing passed on to me by my mother and I was left holding the bag of her messed up genes, both financially as well as emotionally. I can remember crying out to God asking what I had done to be punished so severely. I knew that thinking was totally wrong that God was not punishing me with having 3 ill children, but at the time it sure seemed like it. I was told by my mother that I did not understand her position as the grandparent, that although I was the mother, she had already buried 2 grandchildren, my oldest sisters first 2 children, who probably were undiagnosed Mito children, and it was very difficult for her to know that the possibility of it happening again was very high. It wasn't that I didn't get this, but I needed help, and I didn't have the luxury of separating myself from the medical hell my family was living in and I was very jealous that my family could. I remember telling my