One last breath

The last few months have been a whirl wind of event and feelings. In a way I want to forget everything that has happened, but in all reality, I don't want to forget a minute of what has happened. In an effort to not only preserve everything running through my mind, but to also help me grieve and put things into perspective, I have decided to write everything down that I can. I have created this blog for a place to remember and honor Brittany's memory, and also a way to put my feelings down. They may not always make sense, but when do feelings really ever make complete sense? I'm sure many of my posts will not be cheerful, but grieving isn't always cheerful. This blog will be mostly just for me, but I invite you to read along, and see this through my eyes, as I am seeing things. Please be respectful, if I say or do something that you don't agree with, please keep that to yourself. In this blog I am not out to please anyone, I am looking for peace, however that may come. So.... Here is how it all started.....

Just a week or so before Thanksgiving of 2012 Brittany started complaining of pains in her stomach. It wasn't a typical stomach ache. I was concerned of it possibly being appendicitis. I took her to the Dr to see what could be done. Appendicitis was quickly ruled out. It was a major kidney infection. Her levels were way out of whack. At the time it was only a few days before Thanksgiving. Dr Newman suggested to hospitalize Brittany, but said that if we could hydrate her enough, that wouldn't be necessary and we would be able to travel for Thanksgiving like we had planned. With antibiotics in hand and water being constantly given, we were off. She started feeling a little better for a few days, and during that time we celebrated her 14th birthday. She still wasn't feeling great, so it wasn't a big fanfare like we would have normally done for her . But then she started telling me the pain was beginning to return along with a fever. I called the Dr office, and they looked at her test results from the first visit. They told me that according to her numbers, her kidneys were probably just fine, but that she had probably contracted one of the virus's that were going around and her body was fighting them both. So we continued the antibiotics and keeping up on the water. Sunday Dec. 2nd she was presented to the ward as a Mia Maid in the Y.W., she came home from church and went straight to sleep. Now just so you understand, Brittany does not sleep. She has had several issues over the last several years that I won't get into right now that make it so every night we were having to medicate her to help her sleep. So the fact that she came home in the middle of the day and went straight to sleep was alarming. She slept for several hours before I went in her room and asked her if she was ok. She told me her kidneys were hurting worse that ever. I pulled back her blankets to check her and found a rash that covered her entire body. Very alarmed, I called a friend of mine that works as a Physicians assistant at our Dr's office. I told her what was going on, and she called our Dr to see what he suggested. He said that as long as she could pee just a little that meant that her kidneys were still working and we wouldn't need to go to the ER, but even with a full schedule the next day, he would make time to see her. So the following afternoon I took her in. He ran several blood and urine tests on her. Her kidney levels were looking good. The rash he said was scarlatina. He asked if I thought she needed to be hospitalized. I told him I felt that we could put it off for now and that I would continue to watch her closely. He said he wanted to see her again in 48 hours. So home we went. She continued to sleep all day, just like she had since Sunday. Wed morning arrived and as I was getting the other kids ready for school I went in Brittany's room to check on her. I found her vomiting profusely  It was the worst looking bile I had ever seen. 10:00 was our scheduled appointment. By the time I took her in, she was so weak she couldn't walk without being supported by me. She continued to vomit and I was very worried. They took her straight in to a room where she could lay down since anytime I let go of her she would crumble to the floor. Signing her in at the front desk she just laid on the chairs, not able to even sit. Dr Newman was quick to see her and after talking to us briefly concluded that she probably had mono. There is no test to determine if you have mono right now. There are tests that tell if you've ever had mono, but no way to say if you currently have it, or what strain you have. This time I was sure the hospital was needed for her, and Dr Newman quickly agreed. Our office visit was no longer than a total of 20 minutes. By the time we left and had driven across the street to the hospital, Brittany was so weak she could no longer support her weight at all. I carried her into the hospital like a baby. There were two men who saw me carrying her that quickly got me a wheelchair. I wheeled her the rest of the way to the admitting desk, where we continued the process of admitting her. She continued to vomit every few minutes. It took about an hour to get her settled into her room with an i.v. and to answer all the questions and fill out all the forms. Once she was settled and they had given her some medication to help stop the vomiting, I asked her if it would be ok to leave for a little while so I could get an overnight bag. She said she was fine and quickly went back to sleep. I went home, got a change of clothes and anything else I felt I might need. On the way back to the hospital I stopped by her school to let them know she may not be coming back for several weeks, maybe even months since that is the way mono plays itself out, and then left for the hospital again. As soon as I got to her room I checked in with her to see if she was comfortable. Since the time she was admitted, she had times that she would say things that didn't make sense. Random thoughts or even complete nonsense. But I was glad that at this time she was lucid. I asked her if she wanted to listen to some music from my mp3 player. She said no, not then, but maybe later.... Those ended up being her final words she ever spoke. I sat down on the couch to send John an updated text and noticed her legs were hanging off the bed. I went over to put her back in bed when I saw that she was having a grand mal seizure. I yelled down the hall for help. I work with handicapped children every day, and have seen seizures quite often. Seeing your own child have a seizure is horrifying. I was so scared. They took me into another room and called a code blue to her room, that I later learned meant that all the "high ups" were needed immediately. She ended up stopping on her own a few minutes later. She was then quickly taken to the ICU. Dr Newman was there within a few short minutes and more test were to come. Over the next several hours they did lots and lots of tests to see why she had seized. From the tests I learned that her kidneys were actually cleared up of all infection. The CT scan of her brain came back clean, the lumbar puncture that tests for meningitis came back clean, her white blood cell count was not elevated. Every test came back clean, except for her liver. It was inflamed, but that would have been consistent with mono.  Everyone was baffled. When someone has a seizure, it is very difficult on the body and they usually sleep for about 30-45 mins. to regain strength. During that time it can be common to have more seizures, but Brittany didn't at that time. After the resting time they usually "wake up" and are still drowsy, but are awake. Brittany never woke up. There were a few times she would open her eyes, but they were glassed over and she had no control over her body. Her mouth was slacked and she would drool. She didn't/wasn't the same girl. We began to be very worried as to why she wasn't waking up. The meds she was on to prevent more seizures make people drowsy, but she wasn't coming out of it at all. John was able to finally make it to the hospital once he got off work. We had asked Chad Gasser from our ward come by and help give Brittany a blessing. The Bishop Christensen had stopped by at that time and was able to help with it too. They both stayed for some time visiting with us, and helping us to not be alone. Shortly after they left, Dr Newman told us that he was unsure about what was going on with Brittany, that it was beyond his abilities and that he felt she needed to be life flighted to Primary Children's Hospital. We agreed, and they were called. The next couple of hours were very chaotic. I took about an hour for the life flight crew to come. During that hour, Brittany started to seize again and quite frequently. We couldn't get them to stop without giving large amount of medication to her. As the crew came and started getting briefed on all that was going on, Brittany started to spiral down even further. Her blood pressure dropped tremendously, so they had to force more i.v.'s in to keep her pressure up. As they were preparing to load her onto the ambulance (the crew was on a plane, so we had to take an ambulance to the plane) she started to cough. A terrifying cough, that I will never forget, and hope to never hear again. She sounded like a sick horse as she would cough. Then she would pause and not inhale until the very last second when she would gasp and cough again. It took her whole body to cough, her back would arch, the veins in her neck would bulge. Her oxygen levels were fine, so they decided to proceed. A few minutes later, just as they were about to leave, she stopped breathing all together. They quickly unloaded her and brought her back into the hospital. They had to pump her stomach of all the bile she was beginning to throw up again, and start her on a ventilator. But then her oxygen and gas levels were off. They couldn't figure out why, and where unsure of what to do at the time. The head life flight nurse started to notice Brittany was becoming unresponsive to anything. She had been unresponsive the whole time to talking and to touch with the exception of when they would have to do blood draws etc., but now she was unresponsive to everything. They would test her pupils and they wouldn't respond. Even her reflexes in her knees were unresponsive. She called the head Drs at Primary's trying to find a solution. From what they were seeing and hearing, her brain was beginning to swell. They finally got her oxygen levels to a place where we could finally load onto the plane. While in flight, they got her gas levels where they needed to be, but she still needed the ventilator and was still unresponsive. As soon as we got to Primary's there was a team of at least 10 Drs waiting for us. We did the whole run down of what had happened, what meds had been given, health history... everything. They quickly went to work, and I waited. I waited and waited. The staff there was great. There was always someone with me, or close by so that I didn't feel smothered and yet not alone. Audrey  the head life flight nurse was amazing. I love her. She stayed with me all she could, and even when she had to leave to get another patient  she apologized for having to leave, and was back as quickly as she could, just like she promised.  The Drs put in what is called a "bolt". It's a fiber optic sensor that would monitor the pressure of her brain. They had to shave a patch of hair, and she had what looked like a bulky syringe protruding out of her skull.  It wasn't until a couple of hours later, an about 3:30 that morning after asking her what the odds that Brittany would be able to leave the hospital not being handicapped for the rest of her life, that Audrey had to tell me that IF she left handicapped, that would be a blessing. It was then that I realized Brittany would not be coming home with me. There had been several times that nurses would ask when John would be there. The plan had been that he would stay with the kids for a day or two until Brittany was stable, and then he would come up to S.L. and bring us both home. I didn't understand that they were trying to tell me that he needed to be here to say good-bye. I composed myself just enough to call John and my parents. And then I cried some more. Sitting with Brittany meant something different now. These were to be my last few moments with her. My last chance to tell her everything I wanted to tell her in her life. My last chance to try to put in words how very much I love her. Words are impossible to express feelings like these. And at a time like this, there are no words at all. I lay next to her in silence, hoping she could at least feel my love. Feel what I couldn't possibly express to her, no matter how long I had. Johns brother, Adam came to the hospital and sat with me when I needed someone to sit with me. He let me have my alone time with Brittany also, but never left my sight. He was such a blessing to me at that time. I don't think he will ever know how much having him there meant to me. I wouldn't have had the strength to hold on without his comfort at that time. Over the next several hours it was a waiting game that we would eventually lose. Family members came. My brother, Daniel and his wife, Jennifer brought their daughter Lydia and arrived at the same time John and my kids did. They also brought food and activities for my kids to do. They helped distract them, and helped allow them to cry when they needed to. My sister, Andrea came, as well as Johns parents, Mike and Toni, and his sister, Crystal and her husband Brent. Sheldon Barney, a member of our bishopric was already in S.L. at the time and came for several hours to be with us as well. We were hoping to be able to donate Brittany's organs, but in order to do this, there has to be a series of test done. Mostly they are responsive tests, and after 12 hours they do the tests again. If she fails them both times, like we knew she would, they would then pronounce her brain dead and they could proceed to do what they needed to to donate her organs. She went through the first set of tests at about 5:00 that morning, so we where hoping we would have at least 12 hours from then to spend with her. At around 10:45 her heart rate started to drop. The end was nearing, and so much sooner than we had prepared for. We let everyone have time to say their good-byes. Those that wanted some time alone were given it. We said one last prayer as a complete family, and we were each able to listen to her heart beating. Very somberly, we told the Drs we were ready to shut down the machines keeping her alive. We were surrounding her, holding her hand, and I was laying my head on her heart as she slowly slipped away. It was 11:38 a.m. on Thursday Dec. 6, 2012 when I felt her breath leave her sweet body for the last time.

 

After Brittany died, my parents, my sister Teresa, and brother Adam were able to make it to the hospital and spend some time with her body, and visit with us. In the end, none of the Drs feel she ever had mono, including Dr Newman. The cause of death they are giving us at this time is Encephalitis, a virus that attacks the brain. Because it was a virus that killed her, they didn't allow us to donate any of her organs because they feared her other organs were compromised  An autopsy has been done, but the results will still take several more weeks, possibly months to receive  Dr Newman is calling them every few days to see if there is anything new, but we have been told not to get our hopes up that they will find anything in the end.