I have had a rare opportunity to learn about the person my daughter is. As she has been in and out of consciousness, she had done a lot of talking in her sleep, moving in her sleep, and even more than her fair share of delusions and hallucinations. What do you think would come out if you spent weeks in this state? Here is what I learned about my special girl.
She likes Christmas time, but thinks we don’t eat enough candy canes.
She thinks her siblings need to be more reverent during Family Home Evening.
She believes in Joseph Smith, and thinks reading good books is important.
She even remembers to do her hand and foot stretches for physical therapy while she is unconscious. She has a very obedient spirit.
She likes to sing.
She has frequently spoken up when a nurse has put the TV on for some background noise, thinking she is asleep, and informed them if she thinks it is inappropriate. One night she was having trouble staying awake, so a well intentioned nurse put on a TV show that her child of the same age loves watching. She was surprised when Katie woke up long enough to stammer out the word – “raunchy.” The nurse immediately realized she was talking about the TV show, and changed the channel. Then she started telling all the other nurses how impressed she was with Katie. She too was aware that the show was inappropriate and started talking about how she wished her kid wouldn’t watch it either.
So proud of Katie. I think she will have the strength to do what she knows is right no matter the situation, because these are the things that are really inside her.
This entire ordeal my daughter has been stronger than anyone else I know. If the Lord doesn’t give us trials greater than we can bear, she must be one incredibly strong person. Even the doctors and nurses can see her strength.
However, I suspect there are times when we are given more than we can handle. These are the times that teach us to rely only on our Savior, times when no one else can be there for us, times when we have used all of our strength. Katie has spent weeks in that very state. I can do nothing for her. As a parent this is heartbreaking. It is unrelenting beyond my comprehension. Although she is constantly supported and cared for by incredible technologies, expert physicians, and powerful medications, even they need to ultimately rely on her own body for healing to occur.
Even within these terrible circumstances, there have been some reassurances of hope. Hope is a powerful thing. As we have interacted with the social worker, she has reminded us about how effective the mind is, with its ability to close down on overload. The Sunday speaker in the hospital ward also reminded us about what the Savior did when He was here. He healed the sick. His ministry was to those who were sick, afflicted, and suffering. We were reminded that the Savior is still aware of those who are suffering, and that He lives today, and He has a special place in His heart for those in distress and suffering due to the pains of this world.
One of the wonderful things about our religion is our claim to the biblical priesthood power, or the authority to act in the name of God. This includes the gift of healing. A gift my husband, her father, holds.
As we were preparing to be flown to SLC, we knew that it must be serious and we made arrangements to give her a blessing. In that blessing she was promised that she would have a complete recovery. It seemed very reasonable at the time. We went on with the events that unfolded, comforted in the knowledge that all would end well. It gave us great strength to know she would pull through.
Once she had had her initial evaluation and surgery, the doctor came out and said the exact same words, that he expected a full recovery. As things progress and we have our ups and downs there are days that I wonder if a complete recovery is still possible. It is testing my faith and I am sure hers as well, but deep down in I believe we know all will be well. What a gift.
Yes, it was Friday the 13th when our nightmare began. The blisters did indeed grow overnight and we knew she needed immediate care. Long story short, she was admitted to the emergency room that morning and given the worst case diagnosis. It was Stevens Johnson Syndrome, a devastating syndrome that would make her skin separate and sluff off. Once the reaction was started it would need to run its course. Typically up to 30% of her body would be affected. She would need hospitalization in the burn unit. Only in a few cases was this diagnosis fatal, but our local hospital was simply not equipped to handle this type of problem, so she would need to be flown to a larger hospital for treatment.
We were given the option of flying to Las Vegas or Salt Lake City. We immediately requested Vegas because I had family there. Arrangements were made and I began to prepare to travel to Vegas. In the midst of those preparations the hospital called. They had been rejected by the Vegas hospital because they were full. Her only option now was Salt Lake City, 5 hours away from us. It was an emergency situation, so we did what was needed.
By that night it became apparent that it was again divine intervention that the Las Vegas Hospital was unable to take her. During transport her situation again worsened and spread to more than 30% of her skin. This lead to her having another classification. She suddenly no loner had Stevens Johnson Syndrome (SJS) but TENS – all of her skin inside and out was becoming toxic. (Look it up at your own risk, it is stomach turning.) Her risk of complications and even death had just skyrocketed. Had she arrived in Vegas under those conditions there is a good chance they would have preferred to have her moved to Salt Lake anyway. The hospital here in Salt Lake has a large Burn Unit and is especially well prepared to handle this severe of a case. Upon arrival Katie was immediately assigned to one of the best burn doctors available, and scheduled for life saving, emergency surgery. Even while waiting for her operation she continued to worsen. Finally she was in surgery where 70%+ of her skin was removed to prevent widespread, fatal infections from overcoming her. I won’t go into all the details, but here are the miracles of this terrible day.
Divine intervention put her exactly where she needed to be.
Divine intervention put her in the care she needed at exactly the time when it was most critical that she be there. Her operation shouldn’t have been one minute sooner or later than it was for the best possible outcome.
Miracles of medical knowledge, technology, and faith combined that night to save a young girl’s life. Even a few years ago she may not have survived this.
Tomorrow I will cover the even greater miracle given to us on this day.
The next week was a maze of doctors visits, instacare visits, ER visits, and consultations with more doctors. She was “diagnosed” with all the common problems but didn’t respond to anything. She developed a mystery rash, and every explanation was given, but not supported by the lab work. The only other possibility was linked to a new medication that she was taking, and there was the possibility that she may be developing an incredibly rare syndrome that was so rare most doctors in our area had only seen it once, if they had seen it at all. We were told not to worry about it because it was really, really unlikely. Not only that you would know it if you had it because your skin would start falling off. Yes, we had the right rash, but no skin was falling off.
As we treated the symptoms and nothing seemed to help. I became unusually concerned. Even Katie became unusually concerned. I had downloaded a new song to learn on the piano that brought me great peace. It was an arrangement of “Be Still My Soul.” I played it often. I felt myself having less and less interest in daily activities as I began to focus on Katie. The Lord was preparing us for a horrific experience. It was late Thursday night when we noticed the most disturbing symptoms yet. Katie’s mouth was too inflamed and pussy to eat or drink. She had completely lost any sense of taste, and she did develop some blisters that were the first definitive sign that we were probably looking at Stevens Johnsons Syndrome, and yes, pieces of her skin may begin to fall off soon. It was disturbing, but in retrospect, that week had prepared us emotionally.
If anyone is still interested, I need to re-start recording my daily miracles. My daughter became ill 3 weeks ago and we almost lost her. I am doing the mother vigil thing with her in critical care, and need to record some of the many miracles that have led us to know that she will have a full and complete recovery. Today I think I will start at the very beginning.
My daughter, Katie, was up in the mountains participating in a youth conference with some of her friends. She started to feel ill, but didn’t want to miss out on the activities so she pushed through it. Her joints were aching, but she attributed it to sleeping in a tent on the ground. Her throat also was getting sore, but those things happen. She didn’t want to worry anyone, and she didn’t want to be thought of as being a wimp because she wanted to go home.
Friday night there was a fireside where they spoke about recognizing answers from our Father in Heaven. Katie decided to put those recommendations to the test, and immediately felt strongly that she should go home. It was very late and she was very far from home. Katie spoke up and soon found out that there was a leader heading home who would be happy to take her. She told the appropriate adults, and to her surprise they fully supported her decision. I think they could feel that there was something not quite right as well.
The adult who was heading home shared with Katie that she had been undecided if she should go up or not because it would be very late when it was time to get home, around midnight, but that she felt that someone may need a ride, so she went anyway. Katie was very grateful for the ride. She was also concerned if we would answer the phone to let her in the house. We go to bed pretty early, and by the time Katie was in cell phone range it was almost midnight. That night, however, we had gone to a rare late night movie and had just started off to bed when Katie called. We had no problem letting her in and helping her get settled in.
Katie felt very strongly that the events of that night had been orchestrated in her behalf. And they had. The only thing we did not yet know was how serious this illness would prove to be. Our Father in Heaven knew, and he stepped in to help before we even had a single idea that there was anything seriously wrong. It did not take long before Katie’s ability to recognize this intervention would prove essential to her recovery. One week later, as she was being wheeled into emergency surgery, in the worst pain of her life, we were able to take a moment and together reflect on the ways that Heavenly Father had already opened doors for her, and she was able to acknowledge His hand in preserving her to that point. She was comforted in the understanding that these miracles were not happening so that we could prepare to lose her, but so that we would know that she would come out the other end victorious.
Just a funny double coincidence today. My son has had some issues at school, and we needed to go in and talk with a few of the teachers. My husband had more time than I did, so he took care of it. I remembered I forgot to remind him someone else he needed to talk to, so I started a text to remind him. Before I finished the text, hubby had sent me a text about the same person! An hour later he still was not home so I decided to call and see if everything was okay. As I was dialing I received an incoming call from my hubby telling me that everything was taken care of. Once is a coincidence, twice . . . I think we were on the same wavelength!