November, December and Bacterial Meningitis :(

I will start from the top, as this situation has been one of the hardest, scariest yet enlightening, spiritual times of my life. I began having some strange vision problems about a month and a half ago where I could barely look at any light. It was horrible. My husband and I went to shop at the local grocery store and as we were in there, my eyes felt like they were straining so hard to look, and any light hitting them was very painful. I felt myself become nauseated and a little dizzy. I knew it wasn't normal. I knew I needed to see a doctor. I booked an appointment with a new neurologist who seemed very concerned and ran a huge panel of blood work on me, and gave recommendation that I begin taking a drug called Topamax to possibly relieve my photophobia. I agreed thinking this may really help.
     I began taking the new pills and with no avail, they didn't really seem to work, and the side effects were ugly. I called the lab to get my results of my blood work hoping that something would have showed up in there that would shed some light on things. All of my tests were normal, except for a slightly low vitamin D, a weak positive Deamidated Gliadin peptide IgG and in the antibody/rheumatological tests all came out negative except for the detection of the dsDNA. I had to google what both tests meant. The deamidated gliadin peptide test is very specific for Celiac Disease or gluten sensitivity. I was a little shocked that came out positive because I have barked up the celiac disease tree before only to be told I didn't have it. So now the confusion sets in.
   Curious I also look up what dsDNA is and I see in the search results that it is a test for lupus. My heart sank. I do not want to have this, I do not want to have lupus. I immediately knew I shouldn't have looked up my results and began feeling very panicked. I called my doctor wanting to get in there immediately. However, his MA told me that the titer range of the dsDNA was so small that it was barely anything and that my doctor does not think I have lupus at all. I didn't buy it and began feeling anxious and the horrible effects of the topamax didn't help things. I felt myself falling into this awful abyss that felt like my life was now over.
   I know I was overreacting, but at the time, I felt despair and nothing anyone said could help me. I felt more alone than I ever had. My eyes weren't getting better either. I rushed myself to the E.R. 3 times trying to get someone, anyone to please give me some relief with my sensitive eyes. I was sent home after CAT scans, MRI's and a Spinal Tap were performed and told to follow up with my doctor and that everything was normal. I would go home and just cry thinking my life was over now, and that I have some awful disease that would take me from my family. I really took things over the top.
    I noticed after a time, I weened myself off of the Topamax and began feeling a little better. My family all stepped in to help because they were worried about me. I felt like things were getting a little bit better. This was right after Christmas. Our family all came down with what I will call a mega flu that made all but me and Ethan very sick. Mark had a very high fever, and so did Tatum. It seemed to all snowball and suddenly I went from being the weakest member of our home to the strongest, taking care of everyone who was sick. Our little Caitlyn also caught the bug and coughed endlessly and it seemed like no amount of humidifiers or steam baths would help.
     After a few days everyone began to improve and even Caitlyn seemed to get better. I noticed my health wasn't as bad and I was trying to eat gluten free to try to see if that would help me feel better. My doctor said that those tests were nothing to worry about and that I didn't have a horrible disease like I thought I had. I started to have a little peace. However I still wanted to try the gluten free diet to see if my eyes would maybe improve more. A couple days later is when things really took a turn for the worst.
    It was any normal day, I was watching cartoons in the bedroom with  Ethan and Caitlyn and I notice that she was very agitated and began crying. I was a little confused as she rarely just cries like she in pain. I chalked it up to her teething because she has been drooling a lot and chews on everything. However, a few hours later, she spiked a fever of 101.3. I thought that seemed a little high for a teething fever but again my friend google reassured me that some kids do spike high fevers with teething so I felt okay after that. But the night time the fever shot up very high and even rotating tylenol and motrin would not help and the fever persisted and she was 104.7 at one point in the evening and seemed sleepy yet very miserable.
   Mark took her to the E.R. that morning where they gave her IV fluids and sent her home with a diagnosis of pneumonia. I was worried but felt she would be okay since they also had administered antibiotics there and gave us a prescription. Her fever persisted that day but broke that night so we felt some relief that she was getting better. But to be safe we thought we should take her into her pediatrician, Dr. Marsden. By that afternoon, the fever had returned, and it was a high one. She was 103. 4 at Dr. Marsden's office and he looked very concerned when he was looking at her. She didn't look well. She was very limp and wouldn't open her eyes and when she did, one was droopy like a stroke victim. He said he wanted to admit her.
    So we took her down to the hospital and when we got there, her temp was 106.9. There were about 5 nurses in her room trying desperately to find one good vein to start an IV, but she was so dehydrated that it became difficult. Dr. Marsden came in and he was very frank with me. He said he had taken off the rest of the day to be there and he thought she was worse off than just having pneumonia. He asked if he could perform a spinal tap, and I agreed because I trusted him. I knew that he thought she had meningitis.
   The results soon came back and she did have bacterial meningitis. I felt scared, sick, confused and just wanting this nightmare to end. Mark soon arrived and our parents came to see her. Her fever was finally stable and they gave her a steroid to help the inflammation in her head and spinal chord. I didn't know how I could be strong for her. I kept doubting myself and I felt so much fear because my own health seemed poorer than usual. How could I be there for one very sick little girl? Dr. Marsden came in again and told Mark and I that the hospital where she was couldn't help her the way she needed and that they would life flight her to Primary Children's Hospital in Salt Lake in an hour and a half. This was alot to take in at once and again fear set in. I can't fly. I HATE flying.
   Finally, my Dad came, and Mark and his Dad all gave Caitlyn a beautiful blessing that offered me peace. I finally felt like she would be okay. Then my Dad told me that he wanted to give me a blessing. I knew I needed it and after he was done, I felt more peace. I noticed immediately that my eyes weren't bothering me as badly and that my anxiety and panic had ceased. I knew everyhting would be okay. It is amazing what power the priesthood has and my testimony grew so much right then. I knew the Lord would not forsake Caitlyn and I knew he would give me physical and emotional strength to be there for her.

   She and I flew out that night to Primary Children's. It took us an hour and a half. She was stable, and her vitals were great the whole time. This offered me comfort as I knew the words my Dad offered in his blessing were helping. We arrived there and we met my Mom who flew in from Phoenix. It was so good to see her and have someone there with me because Mark would be driving up with his Dad in the morning. The Doctor there immediately told me that her risk for seizure was high and that she could have one. I felt scared but something told me that she would not have one. She still did not look good, and was very frail and limp. She would cry hysterically when anyone touched her because I am sure her head was very painful.

 

 

 

 

     To make this very long story short, Caitlyn improved daily. Everyday we were in the hospital, she became herself a little more all the time. I knew that the antibiotics were helping her and that she was going to be okay. Her eye soon turned back to normal and her fevers subsided. We were in there for 5 days. She was released with a picc line for us to administer IV antibiotics to her when we got home. I would periodically check my facebook and the outpouring of love from friends and the prayers on Caitlyn's behalf, even from people I didn't know astonished and amazed me. I was so humbled by the generosity and love of others and I knew that besides the wonderful blessings we had both received, the prayers of others were also being answered and heard. The doctors were astounded by her recovery.

     Caitlyn has been home a few days and has her good days and bad. She still has pressure in her head and still spikes fevers but I hope as the antibiotics run their course, everyday she will improve. My health was much better and has been since I received that blessing. I have been able to look at computer screens, my phone and light again without any problems. I feel so grateful to the love of my Heavenly Father, I know that he is merciful and is so mindful of us. Most of all, I think he wants us to just have faith in him.
    This experience has been so bittersweet. I cannot thank my family enough for stepping up and helping the way they have. They all dropped their lives to help us. I cannot be thankful enough. Our kids stayed with my Dad and Susie while we were away, and seeing their bright faces when we came home was so exciting. Ethan came down with a stomach bug while we were gone and it lasted for 24 hours. I am so grateful my family was there for him to help him be comforted when I could not be there.

    Anyways, this is long enough! My heart is so full and I know that no matter what, as long as we have faith in our Father in Heaven, he will be there for us and will not forsake us. His love for us is beyond our comprehension. I know that with the power of the priesthood and prayer, my daughter healed faster and remained safe. I know that it also helped me to be physically and mentally stronger for her.