I just discovered the song One More Time With Feeling by Regina Spektor (If I were more bloggy, I'd post it here. No clue how to do that. Whatever. Trust me, it's awesome.) It reminded me of my son's illness several months ago. Below is an edited version of a "Note" I put on facebook in January, but this experience altered the fabric of my life, so I'm sharing it again here. If you have a coffee maker in your backpack, you might want to use if before reading. It's kinda loooonnngggg, but it's a goodie. Buckle up, grab some tissues and rest assured that my tale has a happy ending.
Thursday, December 23rd
My son, Meade, told me that his bottom really hurt, and I asked him if I could look at it. He leaned over, pulled his little skinny boy cheeks apart and I exclaimed, “Oh my God, Meade! How long has your bottom been hurting?! I’ve never seen anything like that!” He had a spot which I can only describe as a large canker sore near his anus. I told him that we would go to the doctor the next day.
Friday, December 24 (Christmas Eve Day)
We went to the doctor at 11:00am, and Meade told everyone that would listen “I’ve got a sore on my bottom. You’ve never seen anything like it!” And as the doctor pushed and prodded the sore, I held my son while he shook and screamed in pain. The doctor said it was an abscess that had erupted, and that it was now draining. She took a culture and we were prescribed Bactrim as an oral antibiotic and also a topical ointment. We were told that it was very important to keep the area as clean as possible, and since it was in an area of high bacteria, we should probably take a bath after each bowel movement and clean the area with soap and water. The doctor said that if it wasn’t a lot better in 48 hours, we should go to the Children’s Hospital ER because it may have to be drained by a pediatric surgeon. The spot was so painful that pooping brought tears to my son’s eyes and he refused to wipe. We began to take LOTS of baths. (Meeeerrrrryy Christmas).
Sunday, December 26
The sore did not look better. We went to the Children’s Hospital ER at 3:00pm and I described it as “even more oozy and scary looking." We were there for over 2 hours and were told that Meade had staph infection. We were also told that he was contagious and we should take stringent precautions with cleaning the tub and toilet after each use. On the way to get my daughter at a friend’s house, I picked up a big tub of Clorox wipes. I began to sanitize like a fiend. We were supposed to leave for Colorado the next day and I decided to cancel our trip. No point in sitting around a condo with a staph infection, right?
Monday, December 27
Meade started to complain that his tummy hurt and he told me that he “was probably gonna throw up 16 times tonight”. Luckily, that did not happen, but he did not sleep well that night. He also started to run a fever.
Tuesday, December 28
I called the doctor’s office to let them know that Meade was not feeling well and that he had a fever. The nurse said that there was a tummy bug going around. Lots of throwing up, diarrhea and high fever. I told her I was mostly concerned because he had been diagnosed with staph. I was then informed that the culture from the previous week showed that he was actually negative for staph. Huh. Okay. Why hadn't they called me to tell me the results? Sigh. Didn't really matter. So, no contagious staph infection, just contagious tummy bug. Sheesh. On his 3rd bath of the day, Meade started to have diarrhea in the tub. I got out the Clorox wipes, drank lots of coffee, wiped down the tub, wiped down the toilets, washed towels, and prayed that Parker and I didn’t get sick. That night Meade had a temperature of 104. I cried.
Wednesday, December 29 and Thursday, December 30
Meade continued to have high fevers, diarrhea and vomiting. Parker, my little old soul, took this all in stride. We had movie marathons, played Nintendo, and just lounged around. In between baths and showers for Meade, I continued to clean and do laundry in the hopes we would not all not get sick. I put away Christmas decorations, did some thank you notes, ate a bunch of Christmas cookies, drank lots of coffee, prayed and cried during fleeting moments of being alone. On Thursday night, Meade started to get a rash on his left cheek. In the middle of the night, his fever went up to 104.7. John, Meade’s dad, and my entire family were out of town. My support group wasn’t at my beck-n-call. We hadn’t left the house in days. This was not the Christmas vacation I had envisioned. Tears.
Friday, December 31 (New Years Eve Day)
Meade’s rash had spread to both his checks and his torso. We went back to the doctor’s office at 11:30am, and because our personal physician was on vacation, we saw another doctor in the practice. We were told that the rash was “actually a good thing.” She said the rash was a strain of Roseolla, which indicated an end to his fever. The worst was supposedly over. Ha! I can now say with utmost confidence, this was an egregious misdiagnosis. Meade continued to vomit and have diarrhea. His temperature fluctuated between 101 and 103 the entire day. I spent most of the evening roaming the internet for fever/rash explanations. Should we go to the hospital? At 11:00pm on New Years Eve, I called the After Hours hotline and was told a nurse on duty would call me back. 30 minutes later, a nurse said that if Meade didn’t have a temperature of 105, was still urinating and was still coherent (this is almost a direct quote), then I didn’t need to bring him into the emergency room. She also recommended that I take him to an outpatient clinic the next day to have him checked out. 5 days was a long time with a fever that high. Gee, thanks lady. I accepted my second dose of incredibly bad advice for the day and decided to just go to bed and see how things were in the morning. After all, Meade was supposed to get better any second, right?! I rang in the New Year snuggled between my feverish rash-riddled son and my rebellious Nintendo playing daughter. My anxiety was mounting as I welcomed 2011 with a hangover of fear and stress.
Saturday, January 1
Meade was worse. The rash was worse. He had a temperature of 102. I was frantic. Doctor’s office was closed for the holiday. I called the After Hours hotline again. Got a return phone call and the idea of Steven’s Johnson Syndrome (SJS) started to percolate (http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940). Time to go to the ER. Needed to get childcare for Parker. I called Diane Medley. Help. Please help. It was decided it was easier if Diane’s daughter, Anna, came over to our house. Diane would come meet me at the Emergency Room for support. I started Cloroxing counters, toilets, sinks. I didn’t want Anna to get sick. What if we are admitted? I needed a bag. A change of clothes. Toothbrushes. I should take a bottle of water. We could be waiting awhile. The medicine. I should pack all the medicines we’ve used over the past few days. My daughter, The Buddha, silently followed me around the house watching as I cleaned, gathered, muttered my emergency to-do list and tried to fight back tears. She cornered me in my bathroom, and without saying a word, held me still in a huge hug. The dam broke. Wracking sobs. She remained still as a monk, holding me as I cried, a stalwart of strength during my mommy crisis. Whew. Long exhale. Better. Sloppy kiss.Thank you, peanut.
I started to load the car. Anna arrived. Wrapped in a SpongeBob blanket, I put Meade in the car. Okay. We’re going to get help. It will be okay. Arrived at the ER at 11:00am. It wasn’t crowded. We were quickly ushered into a private examination room. Meade was getting worse. Exponentially worse. Diane arrived. Her husband had called Chuck to tell him that Meade was in the ER. Who? Chuck Spicer, the father of one of my daughter’s good friends, was CEO of Children’s Hospital. How did I not know that? Wow. Okay. We were about to become VIPs. Great. I’ll take anything I can get at this point. A myriad of doctors came in to examine Meade. They told him his rash was the “coolest” they had ever seen. They had never seen anything like this. It was changing right before their eyes. One doctor took pictures with his cell phone to send to a pediatric dermatologist. They took blood and started an IV. The ER didn’t have cell phone reception so Diane would pop in and out making calls, returning text messages and arranging further plans for my daughter. I tried to contact John by phone in the room, but reception was bad in the mountains. We got cut off. Did he actually understand that we were in the ER? I called again and got voice mail. I left a message that it was time to come home. Meade was really sick. Come home.
At 2:30pm, Diane left to take care of my daughter. I was alone. 3pm, still in the ER. My son kept getting redder, brighter. He was getting worse. The iPhone-wielding doctor entered the room with a pediatric dermatologist. Meade had again changed since being examined 15 minutes before. After being in the ER for almost 4 hours, I began my first “hushed tone” conversation about my son’s health. It was thought that Meade was having an allergic reaction to his antibiotic, Bactrim, and that his rash was turning into Steven’s Johnson Syndrome. He hadn’t yet developed blisters, which was a good sign. Okay. Big sigh. Okay. What should we do? Start steroids before it gets any worse. Okay. Game plan. We were trying to stop worse case scenario. Okay. Nurses came in to see if I needed anything. Yes, actually, I haven’t eaten. I should probably eat something. One of the nurses offered to stay with Meade as I went to cafeteria. It was then I learned that Chuck had called the ER to check on us. Everyone knew about Meade. We were the talk of the ER.
I went to the bathroom and tried to just focus on my breathing. I prayed for my son. My son needs help. Please help my son. I ventured into the cafeteria where a woman was making a quesadilla, and ooohh, it smelled so good. I’ll take one of those, please. Standing at the food counter, I finally called my mom. As soon as she answered, I tried to speak and couldn’t find the words. I could barely breathe. My son. So much had happened. Throughout the morning I had been relieving my experience as a ten year old when my brother had been pronounced dead in the ER 33 years ago. Could this actually happen to our family again? I tried to catch my breath, but I couldn’t contain myself any longer. I started to sob. Loudly. In the middle of the cafeteria. The woman making my quesadilla came around the counter, hugged me and started to audibly pray. “Jesus, please help this woman. Jesus, please help this woman. Thank you, Jesus. Surround this woman in peace, Jesus. Thank you Jesus." We hugged in a prayerful embrace until my tears subsided. I could physically feel the grace that was created by her prayers. A warm blanket of peace surrounded me. I looked her in the eye, thanked her, and took my quesadilla. Holding hands, we wished each other Happy New Year. After gathering water, a jumbo soda pop and paying for my meal, a sanitation worker at the hospital quietly said as I passed, “God Bless. Happy New Year.” The face of God was literally around every corner as I headed back to the ER.
First round of blood tests came back and they were concerning. More conversations in hushed tones. They wanted to stabilize Meade’s sodium levels before transferring him upstairs. They were concerned about his liver levels. I answered a barrage of questions. They decided to run more tests. Meade’s rash was now all over his body, even on the soles of his feet and his palms. His face was swollen and neon red. SJS was trying to overcome my son. Come on steroids. Do your magic. We watched a SpongeBob movie and waited. Hannah Montana. iCarly. Hours passed. People came in and out. At 6:00pm, Meade’s sodium levels had improved and we were finally moved upstairs to a room.
John had flown home and arrived at the hospital around 7:00pm to a feverish, swollen son who looked badly sunburned from head to toe. He was hooked up to IV and several monitors. As machines blinked and beeped, Meade’s test results continued to get worse. His liver enzymes had doubled since arriving at the ER. We watched TV. We waited. I left for a few hours to shower, eat and get a change of clothes. John offered to stay while I got some rest, but there was no way that was going to happen. As I was headed back to the hospital, Meade had awakened and wanted me there. Mom was on her way to stay the night. I tagged John out around 10:00pm and he went home to sleep. I got in bed with my son. Around midnight, he had his second dose of steroids. Meade’s fever had risen to 103. They said they had to take a blood culture to test for an infection of the blood. This couldn’t be taken from his IV. He had to be stuck again. Three people came in to find a vein, and Meade let out a blood-curdling scream as he was pricked again for the gazillionth time that day. I asked them to take his temperature again. It had risen to 105. He became the talk of the nurses’ station. As my son struggled to sleep, he cried that he was never going see his family again and began to list every single person in our family. Cousins, Aunts, Uncles. Grandparents. The list was extensive. I took it all in and truly wondered if my son was saying goodbye. Was this just feverish ramblings or did he know he was about to exit this world? I didn’t know. I still don’t know. Recounting this night brings a flood of tears to my eyes. My son. That night I held my son and watched him breathe. I embraced every bit of the essence that is Meade Poarch. The way his skinny arms felt, his smell, his skin, the damp heat from his fever, the rhythm of his breath. I drank in his CO2. Were these my last moments with my son? I wasn’t going to miss a second. My son.
Sunday, January 2
Morning. We made it. Fever down. Rash looked better, not great, but better. John arrived with a Venti coffee and food. We started the day with disheartening test results and new IV. His liver enzymes had doubled again. We needed more tests. In a frantic feverish moment in the early morning, Meade had pulled off everything attached to him, including his IV. No, no, no! I hadn’t been quick enough to stop him. He would need to be stuck again and get another IV. Ugh! John went with him this time to another room. It was supposed to make it less traumatic, or something like that. They tried several times to find a vein, he screamed and screamed, and John came back shaken. He said about 9 vials of blood had been taken. Meadster only had so much blood in his tiny body and they kept taking it. We waited as Meade drifted in and out of feverish states. The room was a revolving door of medical personnel, taking temperatures, pulse rates, asking questions and listening to him breathe. They reset machines with beeps and whistles and turned off false alarms. A Pediatric GI specialist came by to consult with us about Meade’s condition. Yes, the liver levels were alarming but it was still functioning, which was good. We discussed several things that could be wrong, including worse case scenario, HLH (http://www.histio.org/site/c.kiKTL4PQLvF/b.1764161/k.7EA3/The_Facts_About_HLH_and_FHL.htm)
This was not at the top of the list, but it was being considered. He recommended that we have an ultrasound of Meade’s liver and spleen. They seemed a little swollen, but not bad. At the moment, the goal was for Meade to not go into liver failure. Okay. Game plan. Avoid liver failure. Okay. I started my prayer campaign on facebook. Please pray for Meade. He is very sick. Please keep him in your thoughts. We checked in with Parker. She had spent the night at a friend’s house and was going to a movie. She was being entertained and could stay all day. She was good. I returned a stream of texts massages and calls. The day passed. John researched the internet about liver levels. We watched TV. We watched movies. More blood tests were ordered. A flurry of visitors arrived in the afternoon. Gifts, food, and good wishes poured in. News was spreading about Meade.
At 5:00pm, I left to go home, shower and change clothes. At 7pm, on my way back to the hospital, Meade called me to say that he wanted peanut butter crackers. Of course! I stopped at the gas station to fill my car up and buy my son peanut butter crackers. It was the highlight of my day. I called my mom grinning from ear to ear. Meade wanted peanut butter crackers. She had been trying to get a flight back home, but because of the holiday weekend, couldn’t get back until Tuesday. That was fine. I felt encouraged that Meade would feel much better by then. I walked into Meade’s hospital room with my bag of goodies and John said that I had just missed the doctor. As I was giving Meade his crackers and a blue bug juice, I told John to give me the latest. He paused and suggested we step outside. In the hall, tears came into my ex-husband’s eyes and he began to shake. I hugged John, which I hadn’t done in years, and I said, “It’s bad?” “Yes, it’s bad.” We had gotten another blood test back. Ferritin. Normal levels are 500 and below. Meade was at 8500. With the additional result, the doctors felt a diagnosis of HLH seemed probable. The diagnosis was even written on the bulletin board in the room. A Pediatric Hematologist/Oncologist would be by in the morning to discuss a bone marrow test. It was treatable, but with steroids and chemotherapy. It could be deadly. Our son. It was worst-case scenario. The nightmare had come to fruition. I told a passing nurse I wanted to speak to the doctor. HLH. Worst-case scenario. We went back into the room once we had collected ourselves, and as our gravely ill son munched on peanut butter crackers, I called my parents. I tried not to hyperventilate in the halls of Children’s Hospital. I wandered back and forth and was able to choke out that my parents… needed… to…. come…. home. I had just spoken to them 15 minutes ago, and the entire world had changed. Meade. Very sick. HLH. Come home now. Meade is having a bone marrow test in the morning. We will be meeting with a pediatric oncologist. Worst-case scenario. Come…home. You need… to…. come home…. now.
Soon afterwards, Parker arrived with McCall, Sophie, Gina and Doug. As the gang traipsed into Meade’s room, wearing glasses from the 3D movie they’d seen that day and being giggly, I dragged Gina and Doug into the hall. It’s bad. It’s really bad. He has HLH. Do we know any pediatric oncologists? Oh my god you guys, it’s really bad. As I spoke, I was grabbing at them, like grabbing at straws. Grabbing at them for hope. It’s worst-case scenario. Gina mentioned she knew people that would pray for him. Should they be called? Yes. Call everyone. Doug made calls. Gina made calls. I made calls. I texted the liver enzyme test results. AST 4300 (normal was 50, 150 was considered high), ALT 2500 (normal was 50), Ferritin 8500. Who is the best pediatric oncologist? Do you know? Please pray for my son. Within the hour, Gina’s friends Lynn and Richard arrived at the hospital to pray for Meade. Lynn sat on Meade’s bed and talked to him about Jesus. She asked him if it was okay if we prayed. Um…sure. We all held hands and prayed. For Meade. For our family. For a speedy recovery. For Jesus to answer our prayers. Around that time, the doctor was ready to speak with me. John chose to stay in the room with Meade. He couldn’t hear it all over again. Doug sat with me as another set of ears. We discussed HLH. There were two strains. One was genetic, which was essentially a death sentence, but the other was treatable. I was told things John had already stated. Doug asked questions. Why? How did he get it? The doctor shrugged and mentioned a possible Bactrim related reaction, but she didn’t really know. All I knew was - It. Was. Treatable. As Parker gathered her things to leave with John, I sat in the waiting room with Gina and Lynn, and we prayed. I asked for strength and stamina. We prayed for a miracle. We all hugged and said goodbye. I said goodnight to Parker and gave her a death grip hug. I hugged my ex-husband. Worst-case scenario. We needed a miracle. As I snuggled in for another long night with my son, I focused on the miracle.
Monday, January 3
Further blood tests were taken at 5:00am. The hopes were to have the results back by the bone marrow test at 8:00am. I was reminded that Meade couldn’t have anything to eat or drink after 6:00am. When would the doctors be coming by? Before 8am? When was the ultrasound scheduled for? Should that be first? Meade continued to sleep.
8:00am. John arrived. When were doctors supposed to come by? Constant traffic in and out of the room. Meade’s IV line would kink and red alarms would go off. He’d move, the leads on his chest would move and set off a series of alarms. Going to the bathroom was a challenge. Wait Meade. I need to unplug this. Be careful of your IV tube. Meade. Go slowly.
Nurse Jessica appeared to check on us. John and I were confused. What time is it? 9:00am. Weren’t we supposed to do a bunch of tests this morning? Do you have the test results from 5:00am yet? Jessica went to find out. We waited. The test results came back. They had changed. The AST had leveled off and the ALT had risen, but just a little. They hadn’t doubled again. There was a change. How about the Ferritin test? That wasn’t in yet.
10:00am. Okay, were people supposed to come talk to us? We thought we were running tests this morning. The picc line (http://picclinenursing.com/picc_why.html) was scheduled for noon. How about the bone marrow test? What about the ultrasound? Have you found out about the Ferritin test? Jessica didn’t know. She would find out. There were problems with the machine that tested the Ferritin levels. They were fixing it. We would know soon.
11:00am. The Pediatric Hematologist/Oncologist (Hemoc) came by to talk to us. Yes, his levels were concerning. Yes, these levels did indicate HLH. Yes, HLH can result in death. It was now on the table. The possibility of death. If we do bone marrow, we should probably do a spinal tap too. Oh. Wow. So much to take in. A spinal tap? Why? There is more specific information in the spinal fluid. Deep breath. Wow. The doctor suggested we wait until the Ferritin levels came back. Since the other levels has ceased to rise dramatically, we should see if the Ferritin had leveled out some too. John and I both wanted a diagnosis for Meade, but we all agreed to wait. We’ll wait and see. We received a couple texts about lunch. You want lunch? No. We’re fine. Are you sure? You need to eat. No, we are having major tests done today. We’re not hungry. We’ll I’m going to bring you a sandwich anyway. Ugh, okay, no mayo. Thanks. (Love TZ with all my heart for making lunch happen for us. Another mom that doesn’t take no for an answer. Thank. You.)
Noon. Went for the ultrasound. Meade still hadn’t eaten since the night before. They checked every organ, blood vessel, and tissue in my young son’s torso. They checked the sounds of each organ. Interestingly, they all sound different. The ultrasound took an hour. They were being thorough. We were going to find out what was wrong.
1:00pm. We arrived back in the room. Any news on the Ferritin? Not yet. We’ll check. At 1:05pm. I had had enough. This is when I drew my line in the cosmic sand and said ENOUGH. I went to the nurses’ station and said in an inappropriately loud tone, “We need test results and we need them now. And just so we’re clear, I’m going to make shit happen NOW!” All the nurses looked at me doe-eyed, there was an audible pause, except for the sound of our nurse’s voice. She was on the phone. Everyone turned to look at Jessica. At that moment, she was being transferred to lab tech Kate who had the right answer. 7125. Then everyone slowly looked at me. One nurse quietly asked, did you hear that? Yes. I did. I walked back into the room. The Ferritin level was down. By over 1000 points. There had been a change. But it was still skyrocket high. It wasn’t enough. I wanted my son better. I wanted him out of that hospital bed and dancing again. I put it on facebook that I had thrown down the miracle gauntlet and I meant it with every fiber of my being. I even proclaimed that January 3rd was Miracle Day. Bam. Shit was going to happen – NOW! I sat in my son’s hospital room and I texted everyone I knew. Pray for my son. Ask anyone and everyone you know to pray for my son. Jessica came into our room. The Hemoc had already received the test results and would be coming in to talk to us. When? Soon. That’s not good enough, Jessica. I want her paged. Now. Jessica, I crossed a line. I mean it. Shit is going to happen now. Do we understand each other? Yes, we understand each other. I’ll page Dr. Baker. Now, Jessica, right now. Yes, I understand, right now. Thank you. I started to text more people. Do you have a prayer group? Please ask them to pray for my son. Would you please ask your church to pray for my son? I went into the hall to find Jessica. Where is Dr. Baker? I mean it Jessica, I crossed a line. Now. Okay. Got it. I sent out more texts. Please post it on your facebook to pray for my son. I cast my nets far and wide. As I sat texting and sending out facebook messages, I could feel a surge of energy. Maybe it was the effects of my earnest battle cry, but I believe I physically felt the power of prayer. I hadn’t slept in days, was struggling with the anxiety of upcoming horrendous tests, and as people everywhere started to pray for my son, I felt strengthened. Strong. Fervent. Shit was going to happen – NOW! The Hemoc doctor appeared and was encouraged with the Ferritin test results. She thought we should hold off on the tests. If he started to go the other way again, we could always do the tests in a day or two, but for now, Meade’s results were better. We asked why things had leveled off. Was there a reason? She shrugged and said she didn’t know. Okay, so no horrific tests today. Sigh of relief. Kim arrived with sandwiches at the perfect moment. I gave her a hug and let her know what had happened in the last hour. Things were looking up.
1:30pm. Chuck Spicer dropped by to see us. How is Meade? We began to fill him in. He told us that Children’s had just hired a Pediatric Liver Specialist. Only one in the state. He wasn’t sure exactly when they were starting though. Chuck asked a passing doctor if the specialist had started. He didn’t know either. We were chatting in the hallway when my mom and sister came around the corner. Oh. Big exhale. The calvary had finally arrived. My family was finally home. Relief. I hugged them both and immediately told them it was a new day. Levels were better. No bone marrow or spinal tap. This was a better day. We all went in to see Meade. Everyone was glad to see each other. Hugs.
2:00pm. Meade was asking for food. We needed to get the picc line before he could eat. When can we make that happen? We all know I’ve crossed a line, right? Yes. Soon. A nurse soon came in to explain the procedure and do an ultrasound of his arm. She was looking for a good “springy” vein. She found one. Perfect. She started to put numbing cream on Meade’s arm as Miss Erin walked in the door, a Child Life Specialist. Let me pause here to say that Child Life Specialists are like living, breathing angels in human form. I completely applaud Children’s Hospital for having these amazing people on staff. They. Are. Priceless. Miss Erin bent down to Meade’s level, looked him in the eye and said hello. She talked with Meade about the procedure. Showed him a picc line. Asked him if he had any questions. Told him that she was there just for him, and if he had any questions or needed anything, she was there for him. Would it hurt? Yes, a little, but that is why he had numbing cream on his arm. Tears. Are you going to have to do it again? Tears. No, this is the last time we are going to stick you. Promise? Promise. Small nod. Sniffle. Okay.
3:00pm. It was time. John carried Meade into another room. We both put on masks and lunch lady hats so we could remain in the sterile environment. (John looked weird. I looked hot. Yeah, I’m not afraid to admit it.) Miss Erin spoke to Meade the entire time. He was given an injection of Versed. The injection made him scream in pain, which caused his entire body to light up. His face became beet red and his body had bright red cheetah spots. He was a one-note human Lite-Brite. His pain was literally visible. Deep breath. The color faded as he began to relax. Huh. I wondered if that reaction would actually cease as he improved. Would his entire body continue to visibly react with color when he was in pain? Hmm, I wonder. I am still not completely convinced that it will not. Miss Erin continued to talk in reassuring tones to my son. John and I were instructed that if we felt like fainting, to just kneel to the floor. Wow. Okay. The procedure began. The room began to get hot. Man, the surgical masks were suffocating. The room started to get claustrophobic. John decided to leave. Room was stifling. I completely understood, but I stayed to hold Meade’s hand. I noticed we were in a room filled with Finding Nemo paintings. Why weren’t there murals on all the walls? What’s up with the furniture in the rooms? Those chairs are horrible. Yes, everyone agreed. As a tube was inserted into my sons arm, past his shoulder and into his chest, I told the people in the room, that as soon as my son got a miracle, I was going to change all that. There was a pause. I said that this experience had changed my life. Profoundly. I proclaimed that 2011 was the year I was going to improve the atmosphere of Children’s Hospital for parents and patients. Another pause. I was gauntlet-wielding maniac. I was going to make shit happen. First though, Meade needed a miracle.
4:00pm. Procedure was over. Picc line looked good. Meade was brought back into the room and surprisingly wanted a balance bar (Thank you, Barbara!). The Pediatric GI Specialist arrived. She had come up to talk to us earlier but Meade was gone getting his picc line. She reported that a big meeting had occurred that morning. The Pediatric Liver Specialist was in on the meeting… Oh they’ve started… Yes, Meade was her first case (Miracle). The specialist had said that it was definitely not the liver. The liver was reacting to something. It was not the source of the problem. The leading cause was thought to be the Bactrim, but no one was 100% sure. Oh, and she had received the ultrasound and it all looked fine. What? Liver, spleen, fine?! There was mild inflammation, but nothing to be concerned about. Her last remarks still make me cry. “That’s all I have. I have nothing bad to say.” Oh. My. Tears then. Tears now. “I have nothing bad to say.” As she left the room, the tears really began to flow. My sister bent down and hugged me and rubbed my back. The conversations we had been having just that morning… tears… Miracle. Oh, thank God, thank God. “I have nothing bad to say.” Miracle.
5:00pm. I went home. Showered, changed clothes, grabbed more clothes for Meade. I started to spread the news. Ultrasound was good. He’s better, a little better. I went to pick up Parker to bring her to the hospital. He’s better today. We did a changing of the guard and John took Parker home. I grabbed John as he was heading out the door and hugged him. “Good day.” “Yes, good day.” What a relief.
Meade and I stayed up late snuggling and watching old Hanna Montana and Suite Life episodes. I was beginning to love the picc line. Blood tests didn’t hurt. No IV line in his arm meant better snuggling. Mmmmm, snuggling together wrapped in our SpongeBob and Disney blankets. So wonderful. He didn’t want to turn off the TV. I didn’t care. Man, those Nickelodeon kids had grown. I took it all in. I was having a meaningless conversation with my son about Zack and Cody and it was absolutely divine. Good day.
Tuesday, January 4
4:00am. They took blood to run more tests. From the picc line. Meade didn’t even stir. So. Great.
7:00am. Nurse shift change. The night nurse was getting the day nurse up to speed. They were discussing the lab results in our room. Oh, let me write these down. I hopped out of bed and went to the bulletin board. We had been trying to keep track of everything. Okay. Ready. Ferritin is 2304. Gasp. I’m sorry. Ferritin. Did you say Ferritin is 2304? Yes. Gasp. His levels had gone down 5000 points in the last 24 hours. Oh. Gasp. Tears. Oh. I collapsed. I feel to the floor sobbing. Uncontrollable sobbing. The nurse bent down and touched me. Huddled on the floor, pressed against the wall, sobbing. These are good results. I….gasp, blubber…I know…..gasp….Oh, the conversations just yesterday… The nurse knew. They all knew. Oh….gasp…oh my God, it’s a Miracle…. Oh my God… Everyone waited until I collected myself. Deep breaths. My son had experienced a Miracle. Phew. Wiped my entire face with my palms. Blew my nose. Okay. I stood up to write the other results. AST 1248 (Down 3000 points. Miracle) ALT 2304 (Lower. Miracle.). I thanked them. I sent out the good news. I texted John. I texted my family. I put it on facebook. I let everyone know. Jan 3rd had indeed been Miracle Day. Prayers had worked. Me, We, The One had made shit happen. I got back in bed to snuggle with my baby boy. My son had experienced a Miracle.
9:00am. My friend Melissa arrived with a Venti coffee and homemade banana bread. She sat down. Man, this coffee is good. Holy smokes this bread is delicious. Everything was manna from heaven. My son had experienced a Miracle.
People drifted in and out. Meade slept. My sister arrived with games. She and Meade played Connect 4. Meade ate. I texted everyone. Jan 3rd had indeed been a Miracle Day. Visitors stopped by. John came by on his lunch hour. We reviewed childcare for Parker. My mom would pick her up and stay with her. Great. She’d spend the night with John again. Great. He would be back after work. Meade was better. Doctors stopped by. Everyone was encouraged by Meade’s test results. A different Child Life Specialist stopped by to chat with Meade. They made a cloth patient doll together, complete with IV. My Mom arrived. Meade showed her his patient. It had an IV. We started getting balloons and flowers. Meade played Connect 4 with his Mimi. He was better.
2:30pm. My mom left to pick up carpool. She’d take care of Parker and then connect with John. No problem. We watched TV. Meade slept. I still watched over him like a hawk, but he was better. The hours ticked by. My son was better.
7:30pm. I had been home to shower and change, and was heading back to the hospital. I was tired. Drained. I felt I had been at war for my son for two weeks. Gospel music struck my ears as I turned on the car. I had been making CDs for the past few months filled with peace and love. I had always made mixed CDs for people, but my recent ones had taken on a spiritual nature. As I turned up the volume, I realized that I had probably been on this path for months. Getting ready. Preparing. For the Miracle. I cranked it as loud as it would go and sang, bellowed, screamed gospel music all the way back to the hospital. I felt energized and powerful as I put my car in park. I walked into the hospital room as Aunt Liz was lying in bed looking at cards with Meade. His cute little face lit up when I entered the room. I asked Meade if he wanted his buddy Luke to come visit for a little bit. Yes! As we settled in, I called Kyle to make a dinner request. I hadn’t eaten in hours. Kyle soon arrived with Chinese food, but before I could take a bite, Luke appeared. He and his brother arrived with gifts and big grins. Everyone was excited to see each other. Meade opened his gifts and they decided to get on the floor and play his new game, Kerplunk. Oh, the IV. Go slowly Meade. Sit right here. No, Meade, that’s too far away. Meade, you need to sit here. Slowly. I tried to eat and kept jumping up and down. A mobile Meade and a hospital IV were not a good match. Ugh. How about Connect 4? Why don’t you get back in bed and play? Great. Luke, Thad, and Meade all settled in for a game of Connect 4. Then they moved to video games. I ate. The adults talked. Visiting hours ended and everyone headed out. Meade was a little tired from the excitement and drifted off to sleep. Dr. Baker came by for a late night visit. We were both so thrilled with Meade’s test results. Again, I asked what she thought. What had changed? She didn’t know and neither of us really cared. I started to tell her my goal of transforming Children’s Hospital. I even named it Be The Change and started a list. She was all for it. We talked about the possibility of us leaving in the morning. We kept our fingers crossed and said goodnight.
Wednesday, Jan 5
8:00am. As I was helping coordinate Meade’s IV so he could go the bathroom, the doctor stopped by. Latest test results had just come back. Another dramatic drop during the night. The doctor and I did some silent hand signals about us leaving the hospital. I asked Meade if he wanted to go home? His face lit up so brightly, both Dr. Baker and I laughed out loud. We were going home. My mom arrived with coffee and breakfast. We were going home!! I called John with the good news. They took out his picc line, and I signed exit forms. We got bags from the nurses. Mom started to collect his things. John’s dad arrived with more gingerbread cookies for Meade and was thrilled with the news. They took a pile of stuff down to my mom’s car. We loaded up my beaming son into a wheel chair with his blankets and pillows. We were going home!
Saturday, Jan 8
Today my older brother would have been 44 years old. Today, I finished writing the story of my son’s grave illness. It has a happy ending. My son is still not quite himself, but he gets better everyday. His motor skills aren’t quite normal yet, but he gets better every day. He tires easily and I still carry a cloak of concern, but he gets better every day.
Yesterday we got a test result back that he had Parvo Virus, Fifth’s disease. I was delivered the results over the phone, along with the belief that no one really knows what happened because it clearly was much more than that. I feel confident a reaction to Bactrim was involved. The extensive rash, the high fever, the skyrocket high liver enzyme levels, no one can really explain them. Why he got better, no one really knows for sure. But I know. I threw down a Miracle gauntlet and I had meant business. Hundreds of people, strangers around the country, were praying for my son. I firmly believe it altered the path of my son’s life. I know it did mine. This is my story. This is the path I walked. My son had a Miracle. I’m going to tell the world.
