The post I have been avoiding....

I couldn't write this one. Every time I tried my fingers shook and my anxiety overwhelmed me like I was drowning in it. But I know a lot of people have questions, so it needed to be done. I had to ask Bryan to write her story.
 I have added my experience in between his. Mine will be in blue in between his. I am sorry if it all seems disjointed with two different perspectives going on, I just don't know a better way to do it.

Many people might be wondering about the events and details that took place with Jane.  Christy had thought we might wait till we actually have an official cause of death, but it looks like it might be another 4 months or so until we find out.  The leading diagnosis for her death was acute bacterial meningitis; however, in order to diagnose someone with meningitis you need to perform a lumbar puncture and study the CSF fluid.  In the following story you will find out that she was too unstable to perform a lumbar puncture and thus we are left waiting for the post-mortem biopsies and studies to determine the exact cause of death. 

I would like to start by stating that it has been very obvious to both Christy and I that this was Heavenly Father’s plan.  Although as painful  as this is, it has been very sweet in many instances remembering and continuing to see God’s hand in our lives.  There is no doubt about that.

Jane had been a very healthy child.  She was never hospitalized and never had more than the typical runny noses and mild fevers.  Leading up to November 15^th we had not noticed anything abnormal about her health.  It was a typical Friday night.  We had finished putting the boys to bed.  Usually Jane would go to bed soon after the boys but she wasn’t very tired.  She fought to stay awake and be with mom.  She won us over as she usually did.  Christy even said that she was “being extra cute” that night, and took a 3 minute video of her (having that video is one of many “tender mercies”).  We finally put her to bed sometime around 10 o’clock.  We watched a movie.  Then as we were going to bed around midnight she started to cry.  Crying is not unusual so we didn’t think anything of it.  After a little while the cry sounded a little different so I went to get her out of bed to nurse and sleep with Christy.  When I picked her up I noticed that she felt warm and was a little lethargic.  She responded as usual to me but was a little weak.  When I went to lay her down with Christy she had a very exaggerated moro reflex (startle reflex).  Whenever my kids are sick, I often worry about the worst case scenarios, thanks to the great medical education I have received without the years of experience.  My mind started to worry, but I reasoned it out because of the much more common illnesses that are always around.  We measured her temperature to be 101-102 degrees.  We fed her some Tylenol and ibuprofen and Christy nursed.  She nursed just fine.  After nursing for a couple minutes she vomited.  We cleaned things up. Christy thought it would be good that I give her a priesthood blessing, which I was more than happy to do.  I volunteered to sleep with Jane and let Christy get some sleep in the guest room.  She continued to be lethargic and sleepy, but wouldn’t fall asleep.  I watched her for a while, not being able to sleep. I was a little uneasy, but thought that she probably just had gastritis.  Around 4:00 am she slowly started to act a little more strange. She reached out her hands in the air as if to grab something, but she would turn her head to look at me when I called her name.  Thinking some warm milk might help her fall asleep, I fed her just a little bit so she wouldn’t vomit again.  She finally fell asleep around 5:00 am, which allowed me to sleep as well. 

Jane woke me up at 6:00 am vomiting again.  I reached over to turn her so she wouldn’t aspirate.  After vomiting for what seemed like forever, I awaited the usual deep inspiration that normally ensued.  It didn’t come.  She wasn’t gasping for air as if something was stuck blocking the airway, she just didn’t breath.  I started to panic.  I yelled for Christy.  As I ran with Jane to the bathroom sink, I had Christy call 911.  I yelled at Jane hoping that I would wake her up, silently saying a helpless prayer.  I tried several breaths of air. I tilted her head back and held her jaw up, hoping to open up the airway.  After a couple minutes she started to breathe again, although the breathing was very irregular and agonal.  Then a small bit of the panic and adrenaline had settled down and I started to think a little more clearly.  I realized that even though she was breathing, she was not there.  Her eyes were open, but they were not following or responding to anything.  I tried to feel for pulses but had never been good at pediatric pulses anyways. 

I woke up to Bryan shouting my name at 6 am. I ran into our bedroom and saw vomit on the bed and found Bryan in our bathroom holding our limp daughter.  I have never seen panic and fear on his face like that. I grabbed my phone and with shaky terrified hands I called 911. I was talking to the dispatcher and she wanted to know when Jane was taking breaths.  They were rapid and shallow. My thought was “Oh good! She is breathing. She will be fine.” At this point I didn’t think she would die, that couldn’t happen.

During all this, Christy was talking to the 911 operator and trying to ask me questions and transmit those answers back.  Finally the paramedics arrived and Christy called our neighbor who ran to our house and was there within 2 or 3 minutes. The paramedics started to put monitors on her, bag mask her, and finally got her into the ambulance.  As I put on some clothes, the ambulance left.  Christy stayed back with the boys to make sure they were ok and I drove off in my car.  Good thing it was so early in the morning because I was running every red light.  I beat the ambulance to the hospital, to my hospital.  I was no longer the responder to the trauma.  The ambulance arrived and she had not improved in the ambulance ride.  They took her to her room and the doctors started working on her.  She was hypotensive and they started some medicine to help increase her blood pressure.  They intubated her.  Many other things happened as I paced around the corner, trying not to hear all the things they were doing to my little baby girl.  One of the ED attending’s not working on Jane came and embraced me and offered say a prayer, which I welcomed.  Christy finally arrived along with our neighbor who came to help give a priesthood blessing.  There was too much going on to give her one.  They paged anesthesia to come assist because her oxygen concentration would drop for a couple minutes, then come back up.  Another ED attending came inquiring what had happened, hoping to get information that would help.  We concluded that among others, maybe she had meningitis and she was started on a bunch of antibiotics to cover bacteria and viruses that would cause meningitis.  She finally was taken to the CT scan.  A neurosurgery resident came to talk to us and tell us about the CT scan, even walking us to the computer to show us.  Essentially her brain was being squished by pressure.  He put a bolt in her head that measured the intracranial pressure.  Normal intracranial pressure is around 10 mm Hg (1-20 mm Hg).  Above 20 mm Hg is elevated.  Her intracranial pressure was measuring between 90 -120 mmHg.  The doctors talked to us and wanted us to come see her even though they were still working on her.  She had the bolt in her head, was intubated, had several iv lines, and the anesthesiologists were trying to put in a femoral central iv line.  We stood as out of the way as we could and held her hand and rubbed her head. 

After the boys woke up I got them breakfast and sat with them and our neighbor for a bit, not knowing if I should stay with them or go to the hospital. After about 15 minutes I decided I needed to go and our neighbor took the boys to her house.  I called my parents and in-laws, told them what was happening and told them to come immediately. As I was leaving the house a friend called my cell.  Her husband (another resident) was working the ED and he called her to tell her Jane had just arrived.  She was asking me “what is going on?” and I remember thinking I had no idea what to tell her but I still felt like Jane was going to live.  Somewhere between the end of that phone call and arriving at the hospital I had a very clear, very penetrating thought “YOU AND BRYAN will be fine.” When I got to the hospital Bryan was crying. More like sobbing. He was so worried and sick and panicked. I couldn’t cry; I was in shock. I felt so nauseous. I held Bryan and kept asking him what the doctors were saying and what it meant and he just couldn’t tell me. He kept saying “I don’t like hearing it. I know what they are talking about and I can’t listen.” So I covered his ears and held him and told him my thought in the car, that we would be okay. I really didn’t want to say the words aloud, but I felt another strong prompting to say them aloud. I’m glad I did because I think saying them out loud helps me now to remember them more clearly. “We are going to be okay.” Our Bishop, Elders Quorum President and another member in our ward (church) came to be with us. The other member is a doctor who works closely with LLUMC and kept going back into her area with the doctors and coming back to tell us what was happening.  I’m so grateful for his insight and expertise.

During this time in the ED, several residents and attending’s that Bryan worked with heard and came down to see him and sometimes it looked like they were holding him. The word spread very quickly he was a resident and I think it made it very emotional for the whole team working on Jane knowing he was “one of them.” In fact, they kept saying “I hear you are one of us”, hugging him and crying. It hit real close to home for everyone.

After she was moved up to the PICU is about when my adrenaline wore off. I was exhausted and couldn’t stop crying.  Our friend (who happens to also be the world’s best landlords) came to the hospital and she held me a lot and cried with me. My mom and little brother got to the hospital and I have never seen my mom cry like that before. It was hard for all of us. Blake was so distraught, yet such a rock for my mom and  I.

She was finally transferred up to the PICU.  There they continued to struggle to keep her blood pressure up.  By now they were slowly titrating up her two different “pressors” (meds to keep up her blood pressure).  But as her blood pressure increased her intracranial pressure would increase equally.  She was maxed out on all medicines they could give to her and she wasn’t improving at all. After talking with the doctors we decided to stop treating her.  They slowly lowered the pressors, allowed Christy to hold her, and turned off the ventilator.  She was declared a little after noon on November 16^th.  We continued to hold her body till late in the evening as family drove down from Las Vegas and flew down from Salt Lake.  

As a doctor you have to learn to shut off emotion while you are treating a trauma. You need to be able to think clearly. This has actually been a struggle for Bryan the last 6 months in residency. But I hear that sometimes, it is just too hard and the providers get emotionally involved. A friend of a friend was one of Jane’s nurses in the ED. We were told after Jane was moved to the PICU, they all cried. The ED attending came to our PICU room around 5 pm sobbing. He hugged Bryan and kept saying “I wish I could have done more. I am so so sorry. I wish there was something else I could have done.” It meant a lot to us that she didn’t go unnoticed. Her sweet, short and perfect life really touched everyone around her.