Thursday, November 15, 2012

Gall Bladder Update and Latest Reflections

I am in the middle of writing another blog covering our time in Pocatello after her lung complications. It was an eventful time from Homecoming events to gigantic uteran clots to the start of basketball season to a skin graft... so it will probably be a fairly long blog (sorry Bo).  But for now I have other things weighing on my mind, so that blog will have to be put on hold. Currently, I sit in room 4407 at Primary Children's hospital while Timmie is snuggled in a purple and yellow quilt with her head curled up to the side of the bed railing (Bo hates it when she does that because she looks so uncomfortable). As I look out the large, square window through which light seeps into our room, I realize a lot has changed since our first admission here in June. The mountains are draped with snow, and there is a strange comfort from the sunlight beating down on the aesthetic scene. This episode began at 4 am on Sunday morning; we had been discharged from Primary's for a successful skin graft only 12 hours earlier and were resting soundly in our beds when her cries echoed through the house. She was doubled up in her bed, holding her stomach with both arms. Bo and I were both distraught and prayed that perhaps it was just backed up bowels from her medications, but deep down - knowing her high pain tolerance all too well by now- we realized something was wrong. She was admitted to Portneuf an hour later, and she spent 72 hours vomiting after every attempt to hold down any fluids and requiring pain meds around the clock with little relief . We arrived back at Primary's on Tuesday afternoon. After a traumatizing attempt to get contrast into her nauseous system through a yellow tube placed in her nose, she convinced the doctors she would be better off trying to drink the liter of fluid needed to perform a worthwhile ct scan. I knew there was no way she could hold down a liter of fluid - she had thrown up six times in the previous two hours with nothing in her stomach - but her nurse believed in her will power and thought it was worth a shot. I prayed, knowing how important it was to get good images of her abdomen. A few hours later we were wheeling her bed down to imaging;  I wondered if the her medical team realized the miracle of the contrast and offered a quiet prayer of thanks. Here is what we know now: she has ascending cholangitis...a fancy way of saying infection in her bile duct. Her gall bladder and her liver function are being affected causing extreme abdominal pain, nausea, and vomiting. Most likely this comes as a result of bacteria in her gut coming up into her gall bladder all because of her low white count and the inability of her body to fight this kind of thing. Thankfully, her symptoms and her liver function numbers have improved steadily since Wednesday morning. Why? I'm still not sure. Possibility 1- we had to change her antibiotics when we got here because of a national shortage of meropenem and the new meds were more effective at fighting the bacteria. Coincidental? Fortunate? Blessed? Could it work that fast? I don't know that we've been "lucky" in a long time. Possibility 2- her white cells started to fight on their own. That would be good. Possibility 3- an answer to many hours on our knees pleading with The Lord to alleviate her pain and support her through yet another setback. A humbling thought. Possibility 4- a combination of all of these things. Maybe the most logical explanation; although I don't know how much I am relying on logic these days when nothing seems to make much sense. That was just the background. I still haven't made it to what is weighing on my mind. Here we go. We are relieved that this seems to be a condition that is improving and that there is a chance she won't need to have her gall bladder removed. Timberly is emotionally spent. I see a look of exhaustion, fear, and discouragement in her yellow, jaundiced eyes.  When she is awake, tears stream down her face and she whispers in broken an muffled syllables that she needs to be done and she doesn't want to do this anymore. She misses her friends and her teammates. She wants to go to school and sit on the bench at games supporting the girls she loves. Despite all of this, my overwhelming emotion today is gratitude. How could we have survived thus far without our many blessings. Modern medicine, dedicated health professionals, health insurance, employment... not just as a means of supporting our family but as a place where people love and support Bo and I and continuously handle the things that we are unable to attend to without ever a word or murmur or complaint, the warmth of shelter in our homes and in the hospital, the convenience of vehicles to transport us to the places we need to be often times immediately and emergently, friends and family and strangers willing to support us with acts of love and kindness, financial support from many giving and selfless people, words of encouragement continuously sent our way despite the longevity of the circumstance, prayers offered on our behalf, the Savior Jesus Christ and his willingness to atone for all of us and provide us with the blessing of eternal life... the list goes on and on. As I cuddled with Timmie in her hospital bed last night per her request, I rubbed her hair gently and massaged her aching back. She spoke for the first time about death and expressed her gratitude for her knowledge of eternal families and her faith in an after-life where we can be free from pain and sorrows of this life. It was a tender and peaceful conversation, not one I could ever predict having or could ever script out in my mind. She explained her belief that this illness would not take her life, but that if it did, how much she would miss us until she could see us again. I calmly told her that I did not believe this illness would take her life either, but if she were called home before the rest of us that she would have a different perspective of time, and that from an eternal perspective this life would seem but a moment.  I told her it would be more difficult to those she left behind, who are blinded by mortality and sometimes feel that the trials of this life are never-ending. Again, I could never have imagined having this candid discussion with one of my children about death and the possibility of being temporarily separated by its hands, but it was a conversation void of panic or fear. It was a conversation of faith, wherein we both knew with a surety that our Redeemer lives and has satisfied the demands of justice and broken the bands of death. My thoughts quickly returned to all of the factors that have contributed to us surviving this life-altering challenge. Having been pushed to what seems to be our limits (I'm realizing more and more that we don't really know what our limits are) my mind turned to those who are less fortunate, those who many not have the many blessings and conveniences that seem to sustain us during this time. The thought of losing just one of those blessings, for example the blessing of a supportive and involved extended family, or the blessing of sacrificing colleagues, or the blessing of loving neighbors and friends, makes this challenge seem impossible and overwhelming. Many people walk among us with heavy hearts and defeated spirits; they have faced disappointment and tragedy that we could never imagine; they may not be quite as fortunate as I may be to be surrounded by an amazing support system and selfless community; they may feel that they walk their roads alone. We need to be less critical, less judgmental of our fellow human beings. Not everyone has been born with the same opportunities and circumstances. Having been pushed so far, so close to my limits, I realize how traumatic experiences and tragedy can break a person's spirit, could cause them to travel down even darker roads of isolation and despair. When I get past the point of spending all of my resources and energy on my daughter's physical, emotional, and psychological health, I want to be better. I want to reach out to those who so desperately need a helping hand, an act of generosity, a second chance. We are pretty hard on each other as humans when we never really understand what a person has been through. I want to be more patient and loving. I want to and need to be better.