Thursday, December 6, 2012

Another Discharge

I can't keep up with my texts again, so here is a quick medical update. Timmie was admitted to Primary's early Monday morning after a rough couple of weeks of debilitating nausea and vomiting. They have done several tests since then and have confirmed that the gall bladder does have a thickened wall which could be contributing to the nausea. After much deliberation, the game plan has been determined. They will leave her gall bladder in for now; no one was eager for her to have another surgery and face risks such as infection because of her low counts. Rather, they have taken her off of three antibiotics, her pain pills, and three other meds. Getting rid of 7 meds in 4 days isn't bad. She is pretty happy about that. The hope is that because of the decreased meds, her nausea will gradually improve. If the nausea stays the same, they can discuss stopping her voriconazole (the antifungul for the cryptoccus they found in her lung) in January.  They would prefer to keep giving that through March though if they can. If her nausea symptoms get worse, they will revisit the gall bladder issue.  So basically we are headed home tomorrow to wait and and see if she feels any better. We are hopeful that getting rid of so many meds will indeed help. Of course she couldn't let us off that easy...just now she had a reaction to an iv med they gave her to replace her Monday and Tuesday Septra antibiotic. Her head and hands started tingling and her nausea intensified. She is trying to relax  while the docs decide if they should continue giving her the rest of the IV or bag it and have her continue taking the Monday/Tuesday pill. The goal this week has been to keep as many pills out of her gut as we can.  Her counts remain close to transfusion level but the decision to hold off has probably been a good one because her crit was up today from 19.7 to 22.4. We usually transfuse at 20, but she has been lingering around there all week and they really want to try to stress that bone marrow out a bit and avoid transfusions as much as possible.  All in all I feel that good decisions have been made on her behalf this week. Emotionally she is exhausted, and she expresses often that she doesn't know how much more fight she has left in her. But it seems just when the challenge seems impossible or overwhelming, someone else reaches out with an act of kindness, generosity, love, and support. It is amazing how much strength it gives Timmie when she realizes how many people are cheering her on. The high school basketball community has been remarkably supportive. Players and coaches have reached out to her with kind words and thoughtful gifts. Last night she cried as she missed her first region game. But she was so touched by the outpouring of love from the Skyline Grizzlies student body, coaches, players, parents, and staff. Their "Team Timme" night both amazed
her and and humbled her. I often wonder if people really recognize the impact they are having on her and on our entire family. I feel as though all the words I could ever utter are inadequate in expressing our gratitude. It is a strange and indescribable feeling to feel simultaneously overwhelmed with grief and enveloped in the love of those who care. Timmie is beginning to feel better from her reaction. We are watching Joyful Noise for what i swear must be the 100th time. She loves it though, particularly the gospel music performances. It seems to uplift her.

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.

Tuesday, October 16, 2012

Going home!

Ok...decided I needed a quick update before we head home tomorrow because speaking from experience I get really busy and overwhelmed when we get home and I have a hard time keeping people informed. So...the good news. We are going home tomorrow at 10 am. (Ok...well that's the plan. I keep adding the time because it somehow makes me feel more like it will really happen.). Discharge is always a hectic time and I always fear I am going to screw something up or forget something that is extremely critical. Today was by far her best day for nausea and feeling decent. She showered by herself, got dressed, took a walk all the way down to x-ray on the first floor, made Kenton a good-bye card, and appeased the dietician by eating three meals (kinda). She was definitely on a mission to prove it was time to get out of here. Yesterday wasn't so smooth. She had her first reaction to platelets. Platelets are such a common occurrence for her that I hadn't even noticed they were going in. Here is what I noticed: she was sitting up in her bed finishing off  a sandwich and one of her favorite orange cream slushies from the U. Suddenly she yelled, "Mom, my bucket! I am going to throw up!" I hurried as fast as I could. She leaned over the all too familiar plastic pink pale. "I don't feel right," she explained. Then she fell back on to her pillows with her eyes closed. I yelled and shook her, but she wouldn't respond. The nurse said she would stop the platelets, which was when I realized she had been getting them. We both called for a rapid response simultaneously. When the first doctor arrived moments later and saw that she was unresponsive, she punched her in the chest. later I learned that it s called a sternum rub, but at the time, I didn't know what was going on. Timmie opened her eyes and shut them once again. Her blood pressures which are normally 125/70 fell to 80/48 and I was freaking out! After they gave her Benadryl, hydrocortisone, and fluids, she slowly started to come to, but she was foggy and complaining of a headache for quite a while. It took her an hour to recover completely and the rapid response team watched her closely trying to decide if she needed to the ICU. Needless to say, she will have to be pretreated for blood transfusions from here on out. I told her if we ever had to have another rapid response again that she was grounded! That didn't seem to worry her too much. She always pulls that stuff when I am here by myself too. I have to get to bed because somebody has big plans to go to the Homecoming dance. Not quite sure how she is going to the pull that off...but she is a fighter, and I have learned that it is good for her to set her mind on something...more often than not she achieves it, and it gives her that little spark of hope she needs to keep battling.  Don't be surprised if I fall behind on the blog updates...this full-time nursing job keeps me hopping.  But once again, thank you so much for your prayers. There were moments of comfort this admission that I knew were coming from a higher power.  I can't wait to get home to Bo and Julian and hope that Timmie can have a little time off from the scary stuff. She will have to be readmitted for about 5 days for a skin graft, but we need to give her a mental and emotional break for a couple of weeks first.

Sunday, October 14, 2012

Lil' J

Slowly but surely Timmie's numbers continue to improve. Today her CRP was 2.5 (Julian's guess was 3.0, so we were all pretty happy with 2.5) and she went 24 hours without a fever. The nausea was still pretty bad this morning, but by this afternoon she was able to shower and eat a small steak and half of a baked potato. All of the doctors and nurses keep talking about that Homecoming Dance this weekend and are doing everything in their power to make it happen. I am so proud of how hard she is fighting despite her all consuming nausea and persistent weakness. A couple of days ago she said that she wished she could fight just one battle...just the aplastic anemia, just the leg, just the lung. She expressed her feelings of discouragement, and through her tears she finally announced, "I am broken."  I knew she meant emotionally, not just physically. She had hit her wall and felt that she just couldn't go on anymore. Then some sweet and thoughtful friends facetimed the Poky vs. Highland football game for her. The crowd chanted "We love Timmie" and the team even sent her a shout out after their big win. She sobbed, as she had been sobbing the last four days, but I saw the strength it gave her. If ever she has needed a cheering section it is now.  Everyone is trying so hard around here to help her feel better. They aren't used to seeing her so sad. We tried yet another nausea cocktail today and finally stopped her continuous pain pump of dilaudid. Fingers crossed once again, we prayed for a bit of relief for her. Cassie and Tony brought Julian down last night which for Timmie was a much needed visit. She has shed many tears the past couple weeks because she misses her little brother. They all kept Julian company while Bo took me out to dinner for my birthday. I was a little hesitant to go out because our last excursion was not quite what Bo had hoped it would be. A couple of weeks ago he took me to the Cheesecake Factory, which I love, but I just couldn't enjoy the moment. Half way through dinner, tears rolled down my cheeks as I tried to explain to him how I felt. It was as if I was in a dream, and I looked around at people eating, drinking, talking, laughing and I couldn't wrap my mind around it. I couldn't remember what it felt like to have a carefree evening and a leisurely conversation. I couldn't remember what it felt like to not to have a heavy, painful pressure in my chest. I wondered how any of us do it...find pleasure in a world filled with heartache and despair. I wondered who had looked at me that way in the past. I thought about a line from Elie Wiesel's speech  entitled "The Perils of Indifference" in which despite the fact that his argument revolves around the need for humans to avoid indifference at all costs, he admits that indifference can be seductive. He even questions whether or not it is necessary to a certain extent as he explores the complexities of the phenomenon:

What is indifference? Etymologically, the word means "no difference." A strange and unnatural state in which the lines blur between light and darkness, dusk and dawn, crime and punishment, cruelty and compassion, good and evil. What are its courses and inescapable consequences? Is it a philosophy? Is there a philosophy of indifference conceivable? Can one possibly view indifference as a virtue? Is it necessary at times to practice it simply to keep one's sanity, live normally, enjoy a fine meal and a glass of wine, as the world around us experiences harrowing upheavals?

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.

Obviously I wasn't the best company for Bo as I was pondering such deep philosophical questions. I should make it clear that I do not feel at all as though people have treated us with indifference. It has been quite the opposite. I have been amazed at the constant show of love by both friends and complete strangers towards us over the past four months. Rather, this was personal reflection. In my comfortable and blessed life, were there burdens I could have helped to ease if I hadn't been so absorbed in my own seemingly trivial worries and concerns. And what about Weisel's rhetorical question exploring the necessity of indifference in order to maintain sanity and normalcy? It is a question I have repeatedly posed to my AP students. It is a question to which I don't have an answer. But in that moment at the Cheesecake Factory, I wondered if I would ever be able to feel that way able to enjoy a nice dinner and an evening with friends or loved ones without the heavy worries on my mind and in my heart. I expressed these feelings to Bo across a tiny table in a crowded restaurant. He listened tenderly and lovingly. He didn't have any answers but he understood how I felt, which brought me more comfort than he could have realized. The look in his eyes at that moment is etched in my heart. I could see how much he wanted to fix it and how much he cared. I am pleased to announce that I was a much better date last night at my birthday dinner. The nursing staff was shocked to see me leaving the hospital in clothing other than my typical sweats and flip flops. I don't know why, but we were able to have a nice, quiet dinner, and I was much better company. We still talked about our deeply embedded concern for both Timmie and Julian, but we were able to enjoy our friendship as we laughed with one another and enjoyed eachother's company. Julian joined us for a night in the hotel and I can't express how much it meant to cuddle with him and talk about school, soccer, friends, books. He talked and talked for over an hour, and I loved every minute of it. Today when it was time for him to head home with Cassie the routine began. He started pouting and talking back and finding any outlet in the world for his anger: the video game, the inadequate treats, taking the stairs rather than the elevator. It is the typical display for him when it is time to say goodbye. Cassie finally headed downstairs to get the car situated and left me in the stairwell with Julian. I encouraged him to hurry and not to inconvenience his Aunt Cassie. In a final act of defiance, he sat down in the middle of the stairway and refused to move. I was out of negotiation tactics and personal imagery strategies to remove myself from the heartwrenching display. With no other option seemingly apparent, I sat down next to him on the stairs and started to cry. Luckily no one was choosing to take the stairs. He stopped the pouting and the power struggle and looked up at me with eyes filled to the brim with tears. I don't know how he manages to keep those huge tears welling up in his eyes from streaming down his face, but he seems to have a real talent for it. I told him that it was ok. That I was sad too. That I missed him so much and hated saying goodbye. That I wanted Timmie to get better and for our family to be back together. I told him that Timmie was getting better and that we would both be home soon. I told him I was proud of how strong and brave he has been. I hugged him and I cried. He was shocked at my reaction and buried his head in my chest an hugged me with all his might. We slowly made our way outside and he tossed some pennies in the little pond out front and made his wishes. Just before getting in the car he made one last attempt in his struggle for power. He closed the door, leaned his back on the door, and insisted he wasn't going. At this point Cassie was blocking traffic. I quickly, without thinking, said, "Jules, hurry and get in the car." He fired back, "I want to make another wish!" He had been stalling for nearly 30 minutes by this time. I replied, "No, you have already made lots of wishes. You have to listen to your mom if you want your wishes to come true." Without a moments hesitation he looked me in the eyes with the most disappointed face I have ever seen from him: "They never come true." I burst into tears, handed him a penny and watched him race across the street to make another wish. He ran back, got in the car and shut the door. Cassie, crying as well, drove away quickly to avoid blocking traffic and avoid prolonging the inevitable. Here's to hoping Julian's wishes can start coming true. He has big welcome home plans for his sister that include a funfetti cake. I am so proud of him and his big sister and how strong they have been during these difficult circumstances. My love for them and for Bo has grown in a way that I didn't know was possible. They are my world. 

Tuesday, October 9, 2012

Experience and Perspective

It is nearly noon and I am still in my pajamas. Timmie has been nauseated all morning. We had to give her some pretty strong nausea medicine so she could hold down her cyclosporine. It is so important that she gets that in her system so her body can continue to make neutrophils. Her ANC today is 3600! I just wish we knew why she is still having fevers and severe nausea. They replaced her chest tube last night. It was clogged and not draining properly. There seems to be some controversy as to how much fluid actually remains in the lung. There also seems to be a lingering ambiguity regarding the source of her fevers and acute sickness. They did do a spinal tap last night as well because cryptococcus is known to cause spinal meningitis. It came back normal, other than a slightly low glucose level. That was a relief. Timmie has a reputation around here for remaining surprisingly stoic regardless of the severity of the circumstance. Last night, however, after waiting patiently for her procedures all day until they could squeeze her into interventional radiology, just before they administered the IV sedation medication, she burst into tears. She let out four or five heavy sobs, shivered twice, gasped for breath, and then permitted streams of tears to flow down her face. One of her friends from Interventional Radiology (Specials they call it) wiped her face with tissues and assured her that everything would be alright. They injected the medicine into her IV, and her eyes slowly closed. An hour later we were standing by her side as we have countless times as she opened her eyes from sedation. Usually she smiles once she sees us and closes her eyes once again as we rub her head gently. ( I have recently been told that that this is yet another thing for which her father seems to be more qualified). This time she reached out for my hand. Once I grasped it, she looked into my eyes and sweetly inquired, "Mom, am I ok?"  I don't know why this hit me so hard. The little girl underneath all of that maturity and stoicism came bursting out. How difficult all of this must be for her not just physically but emotionally.  At the end of the day, she just wants to be ok. I told her that everything went well and that she was just fine, as I (apparently inadequately) rubbed her forehead. I was thinking, 'Oh sweety, you are so much more than ok. You are so amazing and impressive, and I am so privileged to be your mother.' Just recently, as a mother who has watched her daughter suffer for four long months, I have been blessed with a change of heart. I don't know if I should call it a change, because I have always felt faithful and comforted, so maybe it would be better termed a growth and development of heart...not as catchy I know, but more accurate.  Let me explain. Over the past three weeks especially, during this whole lung obstacle, I have begged and pleaded with the Lord to let this trial come to an end. I have told Him that this is enough....she can't handle anymore. I have negotiated with him and explained that it seems like a righteous desire to want my family to be together, to want to be near to my sweet Julian so that I can nurture and guide him and relieve some of his confusion and fear. A few nights ago, after waking up to help Timmie go to the bathroom, I crawled back into bed and looked at the clock. It was 4am and I looked around the room as if I hadn't ever really noticed before where we were and what we were doing. I looked at Timmie sleeping peacefully, and then looked at all of the equipment that was lit up in the dark room. I heard the soft sounds of various devices against the silence of the night. The bubbling chest tube machine, the inflation and deflation of the bed mattress, the gentle breeze of air from the oxygen mask, the slow drip of the IV. Were we really here? Was this really happening?  Suddenly, I was wide awake and I knew there was no chance of falling back asleep. I began to pray. But this time it was different. I prayed, and poured out my soul, just as I have done so many times before. However this time- maybe because of the thick silence illuminated by the soft background noises or maybe because of my strange mid-night alertness- I listened. There were long pauses between my expressions of fear and helplessness. More so than ever before, I communicated with God. I could feel His words permeate my heart, then I would reply to His promptings. The details of this intimate conversation are probably best left as a personal experience, but I will share with you the results of the conversation. First, I realized that it takes much more faith to entirely submit to the will of the Lord and His timing rather than to simply believe He has the power to heal her completely and immediately. I realized I needed to start praying more to endure each day and live it as best we can and to focus less on how long this trial will continue to challenge us. What little things can I do to make the world a better place while I am confined to the fourth floor of the hospital? How can I better lift Timberly's spirits? How can I find ways to serve others? Secondly, I realized that despite what seems to be a fairly tangible spell of bad luck (there isn't a doctor or nurse here who hasn't questioned why so many things have had to go wrong with this little girl), we are definitely blessed beyond measure. Sometimes it is difficult to see our blessings when we are clouded with adversity. Because of this experience with my Heavenly Father, I started to see things a little differently. Rather than being overcome with sorrow because I am not there to mother little Julian, I recognized the amazing blessing of my family who love him just as much as I do and are willing to do anything and everything for him. I realized the blessing of friends and neighbors who have gone out of their way to  help him however they can. As I started to look around, I realized I had been focusing more on the difficult nature of this challenge than on the blessings bestowed upon us to help us endure the hardship. One of the most obvious examples of the Lord preparing us for and helping us through this trial is the relationship we have built with the Wheatley family.  We continue to receive pictures and texts from them while they enjoy their time at Disneyworld. Make a Wish has an amazing program called Give Kids the World where families like Hatcher's retreat to spend happy, hopeful times together and build lasting memories. The founder of the program is a wonderful man who is a Holocaust survivor. He explains looking into the eyes of young children battling illness and disease and relating to their suffering because he spent his childhood in turmoil and fear in an internment camp. At the Give Kids the World Village, they eat ice cream for breakfast and celebrate all of the holidays in one week.  From getting on the plane to eating ice cream for breakfast; from wearing Christmas pajamas and waiting for Santa to wearing Halloween costumes and going trick-or-treating; from bathing in a huge jet tub to feeding the dolphins and seeing Shamu, they have sent Timmie inspiring messages and pictures of the whole trip. She feels like she is there with them! She has been very weak and ill the past few weeks, but despite how awful she is feeling, she lights up with each text an photo. What a blessing they are in our lives. Just got word that little Hatch didn't feel very well last night....having some lung issues. Dang those lungs! Please pray with us that he can find the energy to enjoy the rest of his trip. As I finish up my blog I hear cheering and bells ringing in the hallway. Someone has just finished their last round of chemo. Timmie and Hatcher, in my mind that cheering is for you! I can hear the cheers of hundreds, probably thousands, back in our little Southeastern Idaho communities cheering you on as you fight. You are both such impressive fighters.   I look forward to the next opportunity you have to embrace. I will be cheering so loud!

Friday, October 5, 2012

Cryptococcus, Hatcher, and the Saint

Just a quick medical update. Timmie had 900 ccs of fluid drained from her lung this morning in interventional radiology. 900 ccs! That is 30.5 ounces. Nearly 4 cups of fluid. No wonder the poor kid couldn't breath and get her lung to inflate. They placed a chest tube, so fluids continue to drain.  Her fevers spiked pretty high last night, so we are sure hoping this helps with pain, fevers, and nausea. They will test the fluid for bacteria or fungus and try to figure out why this happened. Meanwhile, Infectious Disease came in with some news from University of Washington. The original fungus found in her lung was not aspergillus after all. Rather it was a fungus called cryptococcus, which they are telling me is much easier to treat. She will, however, have to stay on her anti fungal med (v-fend...I only remember the nickname) for six to twelve months. That doesn't sound so easy to me, but apparently it is much easier to fight. Of course it is fairly rare, and the "smartest infectious doctor alive" has seen less than 100 cases in his career. However, it is much more common in other parts of the country, and smart people know other smart people, so the "smartest infectious doctor alive" will contact the cryptococcus expert and pick his brain. They will test the fluids they extracted from her lung this morning for bacteria and fungus, and they will look for an explanation as to why this happened. She has been awake for about an hour and a half, and we are all surprised at how well she is doing. Her fever is down a bit, but she is still groggy from the sedation.  She just ate some soup and bread, asked for an icee (of course... it is her favorite part of any surgery or procedure) and is getting ready for respiratory therapy. She is in much less pain than we expected, which is a huge blessing because we should get her up and moving tonight. I hate to be too presumptuous or to get my hopes up, but she is doing fairly well at the moment. Her soccer team and a few other groups of friends wanted to come and visit her this weekend, but when we found out about the procedure, we realized there was a good chance of complications. Her last chest tube landed her in picu with a collapsed lung. She was very disappointed that she wouldn't be able to see her teammates and least not this weekend. She is drifting off to sleep now and keeps asking me if her dad is here yet. She loves it when he is here, and gets so sad when he has to get back to Pocatello to work and to take care of little Julian. Lately she has been missing Julian terribly as well. Two nights ago, through her tears, she told me that she didn't want to miss any more time with him before she goes off to college. Ok...I said this would be a short medical update, but I have to share some good news. While Timmie was having her chest tube placed, I saw a message that she had received from Hatcher's mother. Before she got sick, Timmie and her sophomore class raised money for Make-a-Wish so that he and his family could go to Disneyworld. He has had a rough go of it, and Timmie realized that he might not make it to the trip. She and Julian have prayed so hard for him daily, that he would be able to go to Disneyworld. Britt's message was informing Timmie that they are flying out tomorrow. She sent a cute picture of Hatcher and his sweet sister, Jackson, preparing for their trip. As soon as Timmie opened her eyes from sedation, I whispered the good news to her. An instant smile swept across her face. She wanted this so badly for him and his family. I believe that certain people are sent into our lives for special reasons. It was no accident that Timmie crossed paths with the Wheatleys, and I am so grateful that she can look up to people of such character, courage, faith, and strength.  Have fun guys! As always, our thoughts and prayers are with you! Timmie loves the Princess and the Frog princess. Take a picture if you see her. last thing. Have I mentioned that Dr. Carroll is a saint? She made such a huge sacrifice today to make sure that Timmie could get her wound vac change done while still under sedation. She is the most selfless and genuine person that I know. I can completely understand why she and Timmie share such a strong bond. They are kindred spirits. 

Thursday, October 4, 2012

The Latest Hurdle

Last Saturday Bo and I sat in a waiting room while Timmie finished a two hour MRI on her leg, the one that is still attached to a wound vac. The pain in her foot had intensified and we have all figured out that when she gives in and pushes her pain pump something is definitely wrong. Our prayer was that there was no infection and she would not need surgery. I could see the worry in Bo's eyes, which is rare because he always stays so strong and positive for the both of us. Dr. Carrol, her surgeon, (I can't mention her name without reannouncing her sainthood,) gave us the message immediately, even though it was her day off, that there was no infection and she would not need surgery. We were relieved, but found out that she instead had a bone infarction in her lower leg. The best way I can explain it in my limited understanding is that blood supply got cut off to part of her bone and it essentially died.  That doesn't sound good, but that is my oversimplified explanation.  Once again she began asking her most common questions: "Will my leg ever be the same? Will I play basketball again?" No one really has a good explanation as to why this happened. They see it frequently in sickle cell anemia patients, and they know it can be extremely painful. The hope is that it will eventually heal itself, but it could take several months to do so. For nearly a week, she has been making slow but steady progress. Her white counts have been on a steady rise which is cause for celebration. Yesterday her ANC was 2500. She was getting more mobile, and even went for two walks with her walker. However, her low grade fever has been obstinate and persistent, causing all of us to worry that we are missing something. Then two days ago, the nausea set in again causing her to feel discouraged and miserable. We (well the doctors...I include myself because I feel so much a part of the daily challenging decisions) were just about to chalk the pesty fevers up to a medicine reaction and start making plans transitioning towards going home, when Timmie let us know otherwise.  At 7:30 pm last night she woke from a long nap; she was grabbing her side and yelling out. She reached for her pain pump and hit it four consecutive times after waiting the required 20 minutes between pushes. That was a dead give away; she never hits her pain pump unless something is seriously wrong. This morning a ct of the chest showed two large collections of fluid in her lung that would explain the pain, the fever (which isn't low grade anymore at 102.8 and headed in the wrong direction) and maybe even the nausea. She will go under sedation tomorrow to have another chest tube placed to attempt to drain all the fluid. The hope is that it works, otherwise she will need another surgery. The surgeons reminded us that as painful as it is, she will need to move around as much as she can with the chest tube; otherwise, her lung will collapse and all the fluid won't drain. A predicament we remember all too well since we were just facing it a little over a week ago. It is nearly impossible to get a kid who is fighting feet, leg, and chest pain as well as severe nausea to "get up and walk around a little."  The key is to give her enough of the pain and nausea meds that she will feel like she can move without screaming or vomiting, but not so much of the meds that she is completely snowed and unable to open her eyes...let alone move around without falling.  A harder balance than one would think. Honestly, I felt a little angry as they reiterated what she needed to do to avoid further complications when in my heart I knew the expectation was completely unrealistic and almost entirely impossible. Last time they gave us these instructions, we sat in the picu by her bedside and she could barely lift her hand. I knew it was misplaced anger, but I'm not sure where to place it, so I guess there will do. Meanwhile, three Homecoming dresses hang in her little triangular closet at the end of her bed. October 20th is a good goal they say...or at least it was. Do I let her find things to look forward to even though I have watched her disappointment more times than I ever want to remember? What choice do I have? There are no words to tell her to stop looking into the future, to stop dreaming, that things just aren't going to work out the way she wants them to. Each October day that comes and goes brings us one day closer to the beginning of basketball season. None of the disappointment she has faced, none of the normalcy she has lost, will come close to the devastation she will feel when she realizes that her dreams of stepping on the court with the girls she loves are simply out of reach. I'm sure we will tell her that there is always next year, that at least she is just a junior, that people miss seasons due to injuries all of the time. The truth is that nothing we can say will change the fact that to a sixteen year old, hell, to anyone, this just doesn't seem right. It doesn't seem real. That literally in a moment everything can change, can be stripped away. At this moment she sits on her bed stirring her root beer icee.  Her gaze is distant and I wonder what she is thinking about. About an hour ago I saw her scrolling through Facebook or instagram or one of those things. She scrolled too quickly to really take notice of anything. How trivial it all must seem to her. Now her nurse is prompting her to take her meds and reminding her how important it is for her to hold them down. Her shaky hand slowly lifts one pill at a time towards her mouth. Her daily challenges are getting to the commode and taking her meds. How trivial it all must seem to her.  There was one bright spot to my day. I walked by Kenton's room (the cream soda boy) and felt compelled to stop and give him a wave. He gave me the most enigmatic wave anyone has ever given me....probably because I'm not all that exciting or impressive. He just recently had his bone marrow transplant. He gave me a double thumbs up and a grin swept across his entire face. I could read his lips as he looked to his dad and repeated, "Is that Timmie's mom? Is that Timmie's mom?"  You know, it's funny...these kids don't get much of a chance to meet, but they inspire one another. Even though it seems that Timmie has had her fair share of hurdles, she will face this one head on and prepare to jump, just as she has all the rest. She will do it with a green Team Kenton bracelet on her wrist.