Before Kycie was discharged from Primary Children's Hospital in July of 2015, a team of doctors and nurses sat down with us to discuss her care and what we might expect. Kycie had made some miraculous and amazing progress during her 111 days at the children's hospital. She had surpassed all expectations to the point that her rehabilitation progress had plateaued and it was time for Kycie to go home. However, facts are facts. My background is science, major in biology, minor in chemistry and doctor of optometry. I have faith, and Kycie's experience helped grow my faith in ways I couldn't imagine. However, I'm also a realist. People would send us messages saying if we believe and have faith Kycie would return to the way she was before her injury. The scientist in me told me that would never happen. There was too much damage. I had faith that she would progress and get a little better, but some things cannot be reversed. Of course all things are possible with God, but I also have to believe in the will of God. Kycie had a severe traumatic brain injury caused by lack of oxygen that has affected her profoundly in many ways. Kycie cannot feed herself, walk or talk, but those were just some small problems considering. Her body's ability to control body temperature, digest and properly process food and the fact that her pancreas has decided it doesn't want to produce insulin anymore are all much more difficult to manage and are largely out of our control. Some of the most basic reflexes we all take for granted every day were significantly depressed for Kycie. Kycie could not give us a good, productive cough when something was in her throat. This would prove to be a problem and the doctors knew it.
They went over a stack of papers with things to do for Kycie. It would take us 30 minutes just to prepare her medications. We gave her medications four times a day and that adds up to 2 hours each day preparing meds. Actually giving Kycie her medications, and then slow process of feeding her blended food through her g-tube took another hour. Six hours a day would be spent preparing and then feeding Kycie. It was important to sit next to her the entire time to make sure she didn't throw up. Throwing up could cause Kycie to aspirate and she would drown in her own vomit if someone wasn't right next to her.
Don't forget diabetes! With everything going on we were still in Kycie's "honeymoon" phase were sometimes her pancreas would produce a little insulin and others nothing at all. This complicated knowing what to do with her dosing of insulin. Large swings of high and low sugars were pretty common.
The medical team continued to explain all these things to me and Jamie but there was a question that kept nagging at me. I finally had a chance to ask. "What is Kycie's life expectancy?" They all kind of looked at each other before the attending physician told us that she expects Kycie to live as long as any other kid...I guess...Of course....Well...We need to remember a few important things. Diabetes. A type 1 diabetic has a life expectancy of about 12 years less than the general population. Finally, after working through the question in her head and out loud for a few minutes the doctor said, "pneumonia is your number one concern."
Having Kycie home was something I cannot adequately describe. I could spend hours and hours writing about the little things that happened in our house while Kycie was home. Like most things, time and retrospective thinking helps to put the puzzle pieces together. Even now I will have moments that bring me back to Kycie and I understand life just a little better. It is obvious to me now that we were running on borrowed time. Truly, Kycie should have left us back on January 30th. It makes me think of the poem, footprints in the sand, by Mary Stevenson. She talks about looking back at her life and noticing two sets of foot prints in the sand. Her own and the Lords. It troubled her that during the times of greatest sadness and trial she only noticed one set of foot prints and asked the Lord why He would leave her during such times of peril.
"He whispered, My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."
There was no doubt we were carried during the 6 weeks Kycie was home. Some experiences too sacred to share. We didn't leave home too much. We took Kycie to get ice cream one time, once we took her to get a slush and once to the mall. All excursions were short as the heat of the St. George summer was more than her body could handle. Unable to regulate her body temperature very well Kycie easily became uncomfortably hot.
A mild summer cold went through our home the last few weeks of June. Some of the boys had a little cough, and Boston started to get a runny nose. We did our best to keep the boys away from Kycie, but it was nearly impossible with Boston. He loved to hold her hand, kiss her cheeks and sit on her lap. It was hard to know for sure, but I was starting to suspect that Kycie was getting a cold too. Concerned, we cautiously accepted an invitation to ride up to Pine Valley mountain for some tin foil dinners and to escape the heat for an afternoon. It was nice to take Kycie outside and not have her overheat.
It was Sunday, June 28th. Kycie definitely had caught what the boys had and we had been struggling for a few days now keeping her comfortable. Jamie took the boys to church and I stayed home with Kycie. I did my best to prepare meds and meals alone, Jamie is much better at it than me. Each time before a meal we check Kycie's blood sugar. She was high, in the 200's. I dosed Kycie's insulin appropriately, gave her a shot and then started her feed. I watched Kycie's Dexcom through her meal and it slowly kept going up. Within 30 minutes it had two arrows up and I didn't now what to do. Her blood sugar was approaching 400 and I had just given her lantus and humolog injections of insulin. I worried that if I gave her more she would crash, but worried if I didn't she would go into DKA. This was our first experience with the madness of T1D. Feeling helpless, I put a call into the nurse at Primary Children's. Kycie couldn't tell me if she didn't feel good, she could only grunt and groan.
That night Jamie sat at Kycie's bedside and wept. The weight of the situation pressed Jamie into an unusual dark corner. How much can Kycie take? She is obviously struggling to breath, her sugars are all over the place, she is not sleeping well and she keeps throwing up. Monday we got Kycie in to see her pediatrician. He listened to her lungs and ordered a chest x-ray. The x-ray was clean so he started Kycie on a strong antibiotic. He feared it was viral, but we decided to try an antibiotic just in case.
That night, Kycie was still struggling to cough and catch her breath. Jamie got Kycie into the bath and started to wash her hair. This typically would calm Kycie but this time she started to cough. Slowly a hint of pink rolled out of the corner of her mouth. Jamie swabbed her finger into Kycie's mouth and retrieved a good amount of blood. A flash of panic swept over Jamie as she screamed for help. We quickly got Kycie out of the bath and laid her down in front of our bed. We got her dressed into her pajamas but couldn't find any more blood. Was it blood? Kycie let out another cough and again she spit out a little blood. We were able to get a hold of the pediatricians office and speak to the nurse and later the doctor.
Our poor doctor! He inherited Kycie as a patient when we brought her home in May. By far his most complicated patient who, I'm sure, stressed him out just thinking about her each night before he went to bed.
"Is the blood just pink or are there small bubbles in it?" Just pink could be that the dryness and coughing caused the back of her throat to split and bleed. If the blood had little bubbles in it, it's likely coming from her lungs. We did our best to inspect and determined that there were no bubbles. A local medical supply company delivered a pulse oximeter after hours to our house so we could watch her oxygen levels through the night. Kycie didn't sleep much Sunday night, and both Jamie and I would take turns throughout the night adjusting her, suctioning mucous from her mouth or just laying by her. Both of us were running very low on sleep so I offered to take the first shift and Jamie could sleep.
I laid on the floor at the foot of our bed next to Kycie's bed. I didn't have a good feeling. This was all new and uncomfortable. A few weeks before, I had a conversation with Kycie's pediatrician. I told him I was concerned that every time Kycie gets sick they would LifeFlight her to Salt Lake City. St. George does not have any pediatric specialists and the adult ICU doctors wouldn't be comfortable caring for her. Dixie Regional Hospital draws from over 250,000 people, but they have never invested into pediatrics. They have a NICU, but no PICU. He assured me that he would do everything he could to keep Kycie in St. George so we wouldn't have to make the long commute if anything were to happen. To get to Primary Children's on a fixed wing aircraft takes almost two hours, if the airplane and LifeFlight crew are ready at time of need. I thought about how isolated we were in Southern Utah. I wondered if I was making a mistake by living here. I thought about life, and how drastically and quickly mine had changed. I thought about a lot of things because about every 10 minutes Kycie's pulse oximeter alarm would go off indicating her oxygen level dipped below 90.
For most of the night Kycie's oxygen would stay right around 100. It would dip below 90 but bounce up quickly. Around 1:00 a.m. I noticed her oxygen dipped into the 80's a few times then would hang out in the low 90's. I woke Jamie up and we watched her close for another half hour. Now it was consistently below 90 and a few times into the high 70's. I shook my head and looked up. "Really? What am I supposed to do?" We decided to call a relative to come stay with the kids and we would get Kycie to the emergency room. I held Kycie and Jamie drove. As we pulled out of our dive way "Fight Song" came on the radio. I cried all the way to the hospital.
The ER doctor came into the room as Kycie was now on oxygen. "This is pretty easy for me, I am admitting you to the pediatric unit." The pediatric unit is located at the old hospital a few miles away. It was almost 5:00 am as they loaded Kycie and Jamie onto an ambulance for the short drive. I decided to go home, shower and get ready for work. I had already missed so much work and felt we couldn't miss more days. Before going to work with absolutely no sleep that night and only a few poor hours of sleep the night before I stopped into Kycie's new room at the St. George Pediatric unit.
Kycie was doing much better as I left for work. However, within 10 hours things would drastically change. Events that would cast serious doubt in my mind and cause me to ask very difficult questions.