my arms keep sliding off the desk I am so tired... i am a bobble head doll...
nick woke me up from nyquil sleep..doc needs to talk to us
computer room, x-rays, explanation
"muscles aren't designed to work that hard for that long. we don't want her body to wear itself out and quit, so we are going to give her a break by putting the breathing tube back in."
hold it together, Mandy
"this is not a set back, more like a time out so she doesn't get too tired."
That sums it up. I went back to her bedside where she eagerly hugged me. I tried to distract her from the swarm of nurses entering her room like busy bees hovering over their queen. i told her they were here to check the batteries and fix the tv. I told her the nurse was cleaning her iv port when she was really giving her the sedatives. Then Dr. Q stood from the couch where he was overseeing the busy hum, touched me on the shoulder and said, "OK Mom."
I am still reeling with Nyquil and the walk down the hallway, all alone, felt like a drunken stagger.
We are praying now and ask that you do the same. At this point, they are doing for her what she can not do by herself.
Please leave your prayers in the comment box after you lift them up to the Lord. Reading your words helps me...
Monday, April 25, 2011
Sunday, April 24, 2011
Where she is... update at bottom of this post 2am, 7am
(this is from Sat. night, her first night without the ventilator -this is a BIG improvement.)Harper has had a better day today taking tiny baby steps toward the miracle that will occur when we take her home with us.
Last night was a regimen of her labored breathing, unplugging the mass of wires so she can use the potty, and therapy every four hours. In between that she would give me directions with a gut wrenching, squeaky voice that sounds like a baby lamb. Her throat is raw from the breathing tube but she insists on giving us orders.
Today she has been breathing mostly on her own. She is only aided by the oxygen from the cannula rather than a full blown machine. The doc said her morning x-ray looked good so that is a baby step in the right direction.
At this point in time Harper just needs to recover and rest. She will receive physical therapy tomorrow to help her use her arms and legs again. I have a feeling she will show the therapist a thing or two.
It is good that her body is working hard to heal, but we don't want her to have to work too hard or it will wear her out. We have decided to keep her room closed from visitors for a while. It reminds her that she is in here and everyone else is still moving on with life. Her little heart starts pounding too hard and she tuckers out. For now it is just Mommy, Daddy and the nurses. We would still love to see anyone that wants to come, but we will have to meet you in the lobby or waiting room.
We still ask for your prayers for our fighter. Trust me, she is fighting this.
Nick and I appreciate the way everyone has covered our family with prayer. You continue to touch our lives with your love and concern.
*** 2am update ***
Dr. Q just came in, yes it really is 2am, and he was able to look at her current blood samples. My big girl watched the nurse draw the blood from the iv port and didn't even flinch. My fightin' girl is getting brave. Dr. Q said her blood looks good. He even used the word, "improved." The concern now is that she is unable to cough up the stuff in her lungs. The vibrating vest is not working like he hoped, so he is trying something different. Now she will receive a medicine through her breathing treatment that will break down the mucus into a liquid form. Right now her respiratory rate is in the high fifties/low sixties (it elevates when she has visitors, that is why we have cut them off). The respiratory rate should be in the twenties. So my girl is working twice as hard right now to take breaths which explains why she is so tired. She has been running a marathon for the past two days. On top of that, she only had a few bites of chocolate chip cookie and chocolate bunny today. I tried to get her to eat some orange but she wanted the bunny, so I gave her the bunny. She will receive her new and improved treatment either every two or four hours. A new regimen for a new day.
***update 7:12am Monday morning***
Harper has been resting most of the night. Today we have to focus on keeping her pulled up in the bed instead of slumped down which compresses her diaphram and inhibits her ability to take a full breath. We are also going to try to play more breathing games like blowing bubbles and another little spinning thingy they have here. Anything to help her take bigger, stronger breaths. In just a bit Nick is going to take over the bedside watch. I am going to our room down the hall to rest. If you visit today and I am asleep, please don't wake me up. Sorry, I'm just wearing down from the last few days of minimal sleep. The adrenaline is running out and I can feel the soreness in my body and eyes. If you want to speak to one of us, ask the receptionist to notify our room and Nick will step out to speak with you until I wake up.
I just want to add a word of thanks to my friends and family. My other baby girl and both dogs are taken care of and I have no worries. All of my attention is on getting Harper well, just as it needs to be. Thanks for stepping in when that bus hit me. Love!
Sunday, is it Easter?
I am so tired I can't even be poetic this morning. It is morning, right? It is hard to distinguish morning from any other time of the day except by the amount of light streaming through the windows. My internal clock is so off. Last night I ate McDonald's sometime around, heck I don't know...and then my girlfriends brought me Whataburger around, heck I don't know. I didn't eat much of either. Right now I'm having breakfast: coffee, a strawberry and a pineapple flower from the edible fruit basket someone sent. Thanks for breakfast.
I am eating, I swear. So many people are asking me that. I don't know why, I am not the one that hasn't eaten since Tuesday but I know they are concerned. Thanks for that, too.
I'll be honest and tell you all that I am coming off a Nyquil buzz and the screen is swaying back and forth a little, but not as bad as that ambulance ride. I'm just sayin'.
Last night was a good night. After the visitors and family left Nick and I were alone with our sweet girl. She was tucked sweetly under the Tinker Bell blanket with a puppy pillow pet to her right and a brown velveteen bunny to her left. She is a seasoned veteran at dealing with the remaining tubes and cords. She pulls the canula out of her nose every now and then, swipes her palm across it a few times to scratch those inside places, and then secures the tube to it's proper position. If I try to help her she says, "I can do it!" She is a fighter.
She receives therapy every four hours in the form of a velcro strap around her chest that inflates with air and vibrates. This helps loosed the ickies in her lungs and then she coughs hard a few times, coughs that come all the way from her Cajun Shrimp toenails to her Burt's beeswaxed lips. Her heavy blue eyes will then look at me with some sort of request which I promptly answer before she leans back into her pillows to fight her fight. She is a fighter.
Two of my bestest home girls stayed up with me last night. They came armed with pillows, magazines, home made cookies and home town gossip. The perfect combination to distract my weary heart and help me keep vigil through the midnight hours. Within 20 minutes of their arrival I had my head on one end of the couch with a loving hand patting my back and stroking my hair, and my bone tired legs and feet were in another lap receiving a gentle massage. I wish I could say that I loved it. I did love it. But sleep didn't come. It was a modified form of rest. The outer layer of me was able to remain horizontal for a while but my insides still perked up with each beep from the machines or labored breath from my girl. Thank you for that. That is the stuff great novels are written about. That is Ya-ya's by definition. At one point my friend said, "I'll be Weezah. You can hit me!" That made my heart, and my face, smile with a much needed bit of happiness with a dash of gratitude.
They left in the wee hours of morning and I actually did fall asleep on that couch. I woke when the x-ray tech came in to do his job. I think I feel back asleep, not sure. I did come to around 6:15am, stumble down the hall to send Nick to releive me, took a shot of Nyquil and slept until 10am. That is the longest, bestest sleep I've has since...I don't know. I can't remember. The idea of sleeping at home in my own bed with crisp clean sheets is comparable to winning the lottery or some fantastic vacation to the Greek islands. It sounds that good. But it won't be good unless she is there with me, so I'll wait here thank you very much.
I awoke to another sweet face belonging to one of my childhood friends. Me and this girl have been through it all: tears, wins, losses, weddings, kids, youth group...you name it. My second baby girl shares her middle name. If you know me you know this girl. She peeped her head around the door, smiled at me, then did exactly what I wanted her to do. She curled up beside me in the bed and we cried together, arms intermingled like a barrel of monkeys that you can't seem to get apart. I shared my fears with her and she listened with thoses ears of hers that take things in and don't pass judgement. Just listen. And love.
I went down the hallway to sit with Harper, but Gene, our amazing nurse who came back on duty at 7, told me that they were both asleep and wouldn't let me come in. I love you, Gene.
So here I am, typing it all down so that I can look back in a few days, weeks, whatever...and remember. I don't know if I'll want to remember but I want her to know that she is loved by so many.
It is Easter so, Happy Easter. Part of me wants to say, "Happy bleepin' Easter," but that might be sacreligious or something. That is the sarcastic, defensive side of me that is just trying to get through this blur of days. Scurrying mama mouse. I hope that anyone who reads this will take a minute today to really and truly be grateful. Be grateful that you are where you are reading this instead of in a hospital waiting room typing this. Be grateful for the people around you, even if you are arguing or whatever...you are there and they are with you. That is a lot. I am grateful! As tired as I am and as delusion as this post may sound...I am grateful. God is good. Harper is here with us, breathing her tired puppy breaths and fighting her fight. Not many people know that I think of book ideas in my head all the time. At one point I have considered writing a book entitled "Backbone" with stories about the strong women in my life that have made a difference on the woman I am today. Those stories would include my grandmother who managed the farm and three kids after her husband died, another grandmother who looked after her dead son's wife and children with amazing love and care, my mother who picked up the pieces of her own life after my dad died...three little girls and 600 acres, my high school coach who helped me build my faith along with Gloria Gaddis and Jan Gregston who stepped in to minister to a group of high school girls, friends along the way with faith that moves mountains.... now I will have to write about my daughter. My fighter! My firecracker!
She will come home with us and when she does, on that day, we will hunt eggs and eat candy. But today, on Easter, we are grateful. I truly mean this...Happy Easter.
I am eating, I swear. So many people are asking me that. I don't know why, I am not the one that hasn't eaten since Tuesday but I know they are concerned. Thanks for that, too.
I'll be honest and tell you all that I am coming off a Nyquil buzz and the screen is swaying back and forth a little, but not as bad as that ambulance ride. I'm just sayin'.
Last night was a good night. After the visitors and family left Nick and I were alone with our sweet girl. She was tucked sweetly under the Tinker Bell blanket with a puppy pillow pet to her right and a brown velveteen bunny to her left. She is a seasoned veteran at dealing with the remaining tubes and cords. She pulls the canula out of her nose every now and then, swipes her palm across it a few times to scratch those inside places, and then secures the tube to it's proper position. If I try to help her she says, "I can do it!" She is a fighter.
She receives therapy every four hours in the form of a velcro strap around her chest that inflates with air and vibrates. This helps loosed the ickies in her lungs and then she coughs hard a few times, coughs that come all the way from her Cajun Shrimp toenails to her Burt's beeswaxed lips. Her heavy blue eyes will then look at me with some sort of request which I promptly answer before she leans back into her pillows to fight her fight. She is a fighter.
Two of my bestest home girls stayed up with me last night. They came armed with pillows, magazines, home made cookies and home town gossip. The perfect combination to distract my weary heart and help me keep vigil through the midnight hours. Within 20 minutes of their arrival I had my head on one end of the couch with a loving hand patting my back and stroking my hair, and my bone tired legs and feet were in another lap receiving a gentle massage. I wish I could say that I loved it. I did love it. But sleep didn't come. It was a modified form of rest. The outer layer of me was able to remain horizontal for a while but my insides still perked up with each beep from the machines or labored breath from my girl. Thank you for that. That is the stuff great novels are written about. That is Ya-ya's by definition. At one point my friend said, "I'll be Weezah. You can hit me!" That made my heart, and my face, smile with a much needed bit of happiness with a dash of gratitude.
They left in the wee hours of morning and I actually did fall asleep on that couch. I woke when the x-ray tech came in to do his job. I think I feel back asleep, not sure. I did come to around 6:15am, stumble down the hall to send Nick to releive me, took a shot of Nyquil and slept until 10am. That is the longest, bestest sleep I've has since...I don't know. I can't remember. The idea of sleeping at home in my own bed with crisp clean sheets is comparable to winning the lottery or some fantastic vacation to the Greek islands. It sounds that good. But it won't be good unless she is there with me, so I'll wait here thank you very much.
I awoke to another sweet face belonging to one of my childhood friends. Me and this girl have been through it all: tears, wins, losses, weddings, kids, youth group...you name it. My second baby girl shares her middle name. If you know me you know this girl. She peeped her head around the door, smiled at me, then did exactly what I wanted her to do. She curled up beside me in the bed and we cried together, arms intermingled like a barrel of monkeys that you can't seem to get apart. I shared my fears with her and she listened with thoses ears of hers that take things in and don't pass judgement. Just listen. And love.
I went down the hallway to sit with Harper, but Gene, our amazing nurse who came back on duty at 7, told me that they were both asleep and wouldn't let me come in. I love you, Gene.
So here I am, typing it all down so that I can look back in a few days, weeks, whatever...and remember. I don't know if I'll want to remember but I want her to know that she is loved by so many.
It is Easter so, Happy Easter. Part of me wants to say, "Happy bleepin' Easter," but that might be sacreligious or something. That is the sarcastic, defensive side of me that is just trying to get through this blur of days. Scurrying mama mouse. I hope that anyone who reads this will take a minute today to really and truly be grateful. Be grateful that you are where you are reading this instead of in a hospital waiting room typing this. Be grateful for the people around you, even if you are arguing or whatever...you are there and they are with you. That is a lot. I am grateful! As tired as I am and as delusion as this post may sound...I am grateful. God is good. Harper is here with us, breathing her tired puppy breaths and fighting her fight. Not many people know that I think of book ideas in my head all the time. At one point I have considered writing a book entitled "Backbone" with stories about the strong women in my life that have made a difference on the woman I am today. Those stories would include my grandmother who managed the farm and three kids after her husband died, another grandmother who looked after her dead son's wife and children with amazing love and care, my mother who picked up the pieces of her own life after my dad died...three little girls and 600 acres, my high school coach who helped me build my faith along with Gloria Gaddis and Jan Gregston who stepped in to minister to a group of high school girls, friends along the way with faith that moves mountains.... now I will have to write about my daughter. My fighter! My firecracker!
She will come home with us and when she does, on that day, we will hunt eggs and eat candy. But today, on Easter, we are grateful. I truly mean this...Happy Easter.
Friday, April 22, 2011
the bus ***updates at the bottom of the post***
One of my favorite bloggers is Kelle Hampton of Enjoying the Small Things. About a year ago her life got hit with a bus. One of those crazy freakin' buses that come from nowhere and smack into your world so hard that you know life isn't going to be the same from that moment on. I wept as I read her blog that touched so many lives, literally millions. I have read her blog at least once a week since that post heard round the world.
I got hit by that bus.
Even worse, my baby got hit by that bus. That damned bus. If you read my last post you know that that tick tick ticking cough turned into pneumonia. When the doctor said that word, "pneumonia," I thought of Mrs. Brisby and the rats of Nimh. How she scrambled frantically to go see Mr. Ages to find the medicine for her son, Timmy, who was sick with pneumonia. I thought of that little mama mouse scurrying to and fro to salvage the pieces of her life and stitch her world back together.
I am that little mama mouse.
It is hard to keep my eyes on the future, looking ahead. My natural tendency is to look back and dwell on decisions I made that got me here, that got her here, like it is my fault that she has this. That is because my faulty human nature tends to think I have some sort of control. I can assure you, and now I can assure myself, that I am completely out of control. Control has been replaced with helplessness. My faith, my ever growing faith, is pulling my heart forward with some sort of magnetic quality so that I must look forward. Think ahead. She will be ok. We will go home with her in the back seat. She will still be the big sister.
Then fear creeps in like a virus. Like pneumonia. I go to the bathroom and on the walk down the hall I envision myself sprinting down the hall with my hair flying wildly, like a Rascal Flats video, screaming a high pitched frantic mama yell. I see myself crumbling to the linoleum in a broken heap. I see myself looking into Nick's eyes and ..... and then I make myself stop. STOP!
"Jesus take the wheel, give me one more chance, save me from this road I'm on, Jesus take the wheel," what comforting lyrics from the hospital room tv at just the right moment as I type about fear. And my favorite singer, Carrie Underwood, is now singing, "How great thou art" on CBS. What a choice to make on a national platform. Thank you, Carrie. I need this right now. My soul needs this reminder that I am loved by a majestic, powerful God who has a plan for my sweet angel hooked up to tubes and pumps that make my heart stop with every beep and purr. "Then sings my soul, my savior God to thee, how great thou art, how great thou art!"
That is how fast my thoughts are transitioning from fear to hope. But I am choosing to cling to hope. Harper is a fighter, she can beat this.
I took her to the doctor on Monday for a fever and cough. After examination, doc sent us home with an antibiotic. After we had been home a few hours the fever didn't go down. I continued to give her Tylenol and Motrin to keep the fever down, but at midnight it spiked to 104 so I gave her a cold shower. Tuesday morning she was just weak so I took her back to the doctor. After a quick listen to her lungs he ordered a chest x-ray which revealed pneumonia. Scurrying mama mouse. He sent us straight to the hospital. We checked in Tuesday evening and waited. On Wednesday we waited. On Thursday we took more x-rays and a cat scan. Then doc gave us orders to transfer to Sutton's in Schumpert.
The ambulance ride was like a delusional nightmare. I sat sideways facing Harper, swallowing back nausea from the heat, stress and shock. "I am not riding in an ambulance with my daughter on a stretcher. I am not." I tried to look forward at the road to keep me from throwing up all over Harper. The paramedic gave me a vomit bag and offered to give me a shot, but I said no because I hate needles. I noticed the driving paramedic's eyes darting from the road to his lap where a spiraled black cord connected to the cigarette lighter. "I don't mean to be a #itch, but what is he looking at?" The paramedic in the back with me looked at me like I was crazy, glanced around to the driver, then told me that he was looking at the GPS. "I think you are just really tired," she said. Well I am not stupid. I saw the GPS and it was not connected to the cord in his lap! UGH! Then she leaned forward and said something to him. I tried not to stare but when I did glance back that way the cord was curled up in the drink tray and his eyes were on the road. The ambulance didn't swerve so badly after that.
When we arrived at Sutton's I felt like I was panting after the paramedics as they strode with intentional steps to get Harper to the right place. I was carrying three bags, I was nauseous, I was out of breath, I was afraid. I wondered if they would even notice me melting into a puddle behind them.
They pushed her into a bright room where five nurses stood ready to assist. Moving her from the gurney to her bed was like taming an alligator. A sweet blonde nurse tried to lead me down the hall while I choked back the silent tears streaming down my cheeks. Each step I took was haunted by her wails, "I want my mama! Maaaammmaaaa!" She opened the door to the hospitality room where Nick was waiting for me. I dropped the bags and fell into his loving, panic-stricken embrace. The door opened again and the sweet blonde asked me to come back to the room until she was secure. I ran-walked down the hall in "hold on, honey, Mama's coming'," kind of way. My girl is a fighter. I held her hand and tried to talk in that soothing mama voice, tried to tell her to calm down that it was going to be OK while my insides were screaming louder than she was. I know I looked a mess and the nurses kept giving me sideways looks of pity. I really didn't care. When they had her calmed down a little, Nick and I were taken into a large room of computer screens and introduced to our new doctor. His name sounds like "keshy" but it starts with a Q. You figure it out. We sat down in front of a large screen where he showed us images from the cat scan. This is the first time we were shown anything to try to help us understand what was happening inside of her body. The white skeleton on the black background was my baby. A gray cloud covered where a lung should have been. He showed us several views of her chest, explained the procedure while I hid my face in Nick's fleece, and then we gave him the go ahead to start "right now."
We waited. Together. This time together was too intimate to share. It is for me to lock away in my stash of memories of things I absolutely love about my husband.
We received our first update after about 45 minutes. The tube was in, fluid poured out, it is going good so far. Another update 30 minutes later said he was finished and the team was giving her a central line. During this terrible waiting time we were flooded with prayers from friends, colleagues, and family. We can't thank you enough. Sometime that night we both closed our eyes in different rooms of the hospital.
At 4am Friday morning I awoke when the x-ray tech came into the room. I peered over my pillow while they moved her ever so gingerly to take the photo. I closed my eyes. An hour later Dr. Q asked me to follow him into the computer room so I grabbed Nick from down the hall and we sat, once again, with sandpaper eyes, in front of the large screen. This time two images were in front of us. One from 7:35 pm and the other from 4:11am. The new picture showed two lungs. One was nice and full of air, the other was still cloudy, but filled with air. Strange wires and tubes draped over the skeletal image like jewelry on a gypsy. Already we could see improvement. Then he showed us how much fluid has been collected from her lung. At this moment three white boxes are lined around the side of her bed on the floor, like cans at a fraternity house, to show how much fluid was consumed. Each box holds 200cc, the first two are completely full and closed off. The third is still slowly filling with the thick yellow fluid flowing from the tube in her side. Over 450cc from her one little lung.
So everyone is asking for updates but we really don't have any just yet. Her fever went up again today to 103 but they are controlling that with Tylenol every 4 hours. She stirred some today and I was able to look into her perfect blue eyes for a brief moment. Her mouth is full of tubes, a wire is going down her nose, there is tape holding the wires and tubes, but through all of that I was able to see her little dry lips form the most precious word in the whole world, "mommy." I just held her hand, stroked her hair, kissed her and told her how much she is loved. They said she can hear me. At one point she squeezed my hand as if to let me know that she knows I am by her side. In that instant my heart spilled over with love and broke at the same time.
Writing this helps. Texting and talking helps because in those moments I am not sitting here listening to the whiz and hum of machines. I don't hear occasional beeps or see tiny blinking lights. Somewhere down the hall Nick's eyes are closed. I think it is time for me to close mine as well. This is part of my soul on the screen and my heart is on the bed beside me.
*** update at 8:51am Saturday morning***
Her nurse just showed us the latest report. The LEFT lung (the healthier lung) is completely free of the affusion (yucky stuff). That is an improvement since we got here on Thursday! The RIGHT lung (unhealthy lung) is almost free of the fluid, another good sign, even though it is still infected. They increased her antibiotic from 300mg to 400mg last night so we will hopefully see some improvement in her blood count, fever, etc.
***update at 10:33am Saturday morning***
God is so good! Dr. Q arrived, met with us and showed us the x-rays. the black screen now showed two lungs full of air! Two normal sized lungs. He just took out the tube in her side that was draining fluid from the lungs and bandaged her up. Now they are taking her off of the sedation so that she can be weaned from the ventilator! Thank you Jesus!
As he stooped over her bedside preparing I prayed for wisdom, discretion, and steady hands for Dr. Q and Gene, our nurse. Dr. Q looked in my eyes, "You are brave." I wanted to tell him he is wrong, that I'm really scared out of my mind. I peered around his backside while he removed the tape, then I walked to the opposite side of her bed and held her hand, stroked her forehead, watched and prayed. I kept taking deep breaths and tried to bend my knees so they wouldn't lock up. I didn't want to fall out like a middle school choir kid at the first concert. Don't lock your knees.
His gloved hands worked steadily to snip the sutures and pull the thin white cord from her side. He showed me the size of the tube that was actually inside of her body - much smaller than the tube connected to the drain tubs. Breathe, Mama. "Jesus loves me" played softly from the CD player beside her bed. Again, God's provision. He stepped away from the bed, smiled up at me, checked the monitors and washed his hands. Then he placed the round end of the stethoscope to her chest. First the left side then the right. He smiled. "Decrease the sedation," he told the nurse, "Let's get her ready to remove the ventilator."
Did I hear him correctly? Remove the ventilator? You mean, she might be able to breathe on her own by tonight? She might be able to lock eyes with me and know how much she is loved? Yes, I heard him correctly.
I stood by her bed crying tears of joy and silently praising my ever present God. Dr. Q received a tight embrace from a happy Mama and then I went down the hall to tell Nick. We crossed the hall into the chapel and praised God for this miracle. We prayed for continued healing for our girl. We thanked Him for placing such amazing prayer warriors in our path. We thanked Him for competent doctors and nurses. We thanked Him for loving us and our family. God IS good. We know we are not completely in the clear but this is an amazing step in the right direction.
As I'm writing this post, Gene walks in and smiles at me. "You know this is a miracle right?" Yes, I know. "It is just amazing that he is taking her off of the ventilator so fast."
"Not too fast, right?" I queried.
"No. He is the best. Any other doctor would keep her on there for a lot longer. He is the best. You are lucky you got him."
"Not lucky. Blessed. That is God's provision for us." At this point those darned tears started again.
"This is a miracle. You know you could've lost her. Infection was that bad."
"I know," sniff, "You just don't want to let your mind go there. But we know and we are so grateful. Everyone in our town is praying for her."
"It works," he said. "It is powerful stuff. This is the good part about my job."
I am blessed and highly favored, as is my girl. My fightin' fiery curly headed cherub. I know we have a long road ahead of us. I know. But this is our miracle and I will never think of Easter the same. Each year I will not only celebrate the resurrection of Jesus, I will remember this fight. This fear. And this miracle.
***update at 12:44 Saturday***
They successfully removed the ventilator and she is breathing on her own. She is still receiving oxygen through the canula (nose tube). She has opened her precious blue eyes, she is trying to speak to us, she is resting.
***update 4:07 Saturday***
About 30 minutes after the previous post Harper took a step backwards. The xray they took after removing the tubes looked worse than the one this morning that gave the doctor the confidence to remove them. It has been a scary afternoon. Such a dramatic high followed by a terrifying low. Hope and fear. PLEASE continue to pray for healing for Harper. She IS a fighter. We need prayer!!
***update 4:19 Saturday***
Our amazing nurse, Gene, just called Dr. Q to ask about Harper. Dr. Q said that he expected some fluid to become evident in her lung and that his plan is for her to expel it by coughing. When she wakes up from her rest and is completely off of the sedation she will wear a vibrating vest to help loosed the schmagma in her lungs. Then he wants her to try to stand up and walk around to help her cough it up. The good news is that the doctor is not surprised, he expected it, and he has a plan for her. It has been a very long, taxing afternoon. I cried on my own mama's shoulder and to be honest, it felt so good. I needed to be loved on for a second. I'm still her baby girl and it is hard to believe that she loves me the way I love Harper Leigh. We appreciate all of the love, support and prayers. Please don't stop.
***update 7:41pm Saturday***
We have had a positive evening. Dr. Q came to our room to reassure us that she is doing fine. According to him she is in recovery mode. We are by no means in the clear, but we are so much better than we were earlier this afternoon. A lot of that has to do with removal of fear due to his thorough explanations, which included a diagram of the lungs and how they work. Now we need the antibiotics to fight off all of the infection and build up her strength. If you need a mental picture of her progress this is the best I can do as tired as I am: she stood with assistance to move to a chair for about an hour. She ate a red popcicle (only after she stuck out her bottom lip when we presented her with an orange one), she drank some water through a straw. She let me know that she wanted the Tinker Bell blanket I was using instead of the white hospital blanket. She told us she wants to go to the beach. She pointed at the TV when she saw the Wizard of Oz. She is fighting her battle.
Nick and I are crumpled together now on the couch by her bed looking across the room at our blessing, our little miracle. We are tired. Again, we want to thank everyone for the prayers. Prayer changes things and we believe this now more than ever. Resting now.
Please continue to pray and I will add updates to the bottom of this post as we get them.
I got hit by that bus.
Even worse, my baby got hit by that bus. That damned bus. If you read my last post you know that that tick tick ticking cough turned into pneumonia. When the doctor said that word, "pneumonia," I thought of Mrs. Brisby and the rats of Nimh. How she scrambled frantically to go see Mr. Ages to find the medicine for her son, Timmy, who was sick with pneumonia. I thought of that little mama mouse scurrying to and fro to salvage the pieces of her life and stitch her world back together.
I am that little mama mouse.
It is hard to keep my eyes on the future, looking ahead. My natural tendency is to look back and dwell on decisions I made that got me here, that got her here, like it is my fault that she has this. That is because my faulty human nature tends to think I have some sort of control. I can assure you, and now I can assure myself, that I am completely out of control. Control has been replaced with helplessness. My faith, my ever growing faith, is pulling my heart forward with some sort of magnetic quality so that I must look forward. Think ahead. She will be ok. We will go home with her in the back seat. She will still be the big sister.
Then fear creeps in like a virus. Like pneumonia. I go to the bathroom and on the walk down the hall I envision myself sprinting down the hall with my hair flying wildly, like a Rascal Flats video, screaming a high pitched frantic mama yell. I see myself crumbling to the linoleum in a broken heap. I see myself looking into Nick's eyes and ..... and then I make myself stop. STOP!
"Jesus take the wheel, give me one more chance, save me from this road I'm on, Jesus take the wheel," what comforting lyrics from the hospital room tv at just the right moment as I type about fear. And my favorite singer, Carrie Underwood, is now singing, "How great thou art" on CBS. What a choice to make on a national platform. Thank you, Carrie. I need this right now. My soul needs this reminder that I am loved by a majestic, powerful God who has a plan for my sweet angel hooked up to tubes and pumps that make my heart stop with every beep and purr. "Then sings my soul, my savior God to thee, how great thou art, how great thou art!"
That is how fast my thoughts are transitioning from fear to hope. But I am choosing to cling to hope. Harper is a fighter, she can beat this.
I took her to the doctor on Monday for a fever and cough. After examination, doc sent us home with an antibiotic. After we had been home a few hours the fever didn't go down. I continued to give her Tylenol and Motrin to keep the fever down, but at midnight it spiked to 104 so I gave her a cold shower. Tuesday morning she was just weak so I took her back to the doctor. After a quick listen to her lungs he ordered a chest x-ray which revealed pneumonia. Scurrying mama mouse. He sent us straight to the hospital. We checked in Tuesday evening and waited. On Wednesday we waited. On Thursday we took more x-rays and a cat scan. Then doc gave us orders to transfer to Sutton's in Schumpert.
The ambulance ride was like a delusional nightmare. I sat sideways facing Harper, swallowing back nausea from the heat, stress and shock. "I am not riding in an ambulance with my daughter on a stretcher. I am not." I tried to look forward at the road to keep me from throwing up all over Harper. The paramedic gave me a vomit bag and offered to give me a shot, but I said no because I hate needles. I noticed the driving paramedic's eyes darting from the road to his lap where a spiraled black cord connected to the cigarette lighter. "I don't mean to be a #itch, but what is he looking at?" The paramedic in the back with me looked at me like I was crazy, glanced around to the driver, then told me that he was looking at the GPS. "I think you are just really tired," she said. Well I am not stupid. I saw the GPS and it was not connected to the cord in his lap! UGH! Then she leaned forward and said something to him. I tried not to stare but when I did glance back that way the cord was curled up in the drink tray and his eyes were on the road. The ambulance didn't swerve so badly after that.
When we arrived at Sutton's I felt like I was panting after the paramedics as they strode with intentional steps to get Harper to the right place. I was carrying three bags, I was nauseous, I was out of breath, I was afraid. I wondered if they would even notice me melting into a puddle behind them.
They pushed her into a bright room where five nurses stood ready to assist. Moving her from the gurney to her bed was like taming an alligator. A sweet blonde nurse tried to lead me down the hall while I choked back the silent tears streaming down my cheeks. Each step I took was haunted by her wails, "I want my mama! Maaaammmaaaa!" She opened the door to the hospitality room where Nick was waiting for me. I dropped the bags and fell into his loving, panic-stricken embrace. The door opened again and the sweet blonde asked me to come back to the room until she was secure. I ran-walked down the hall in "hold on, honey, Mama's coming'," kind of way. My girl is a fighter. I held her hand and tried to talk in that soothing mama voice, tried to tell her to calm down that it was going to be OK while my insides were screaming louder than she was. I know I looked a mess and the nurses kept giving me sideways looks of pity. I really didn't care. When they had her calmed down a little, Nick and I were taken into a large room of computer screens and introduced to our new doctor. His name sounds like "keshy" but it starts with a Q. You figure it out. We sat down in front of a large screen where he showed us images from the cat scan. This is the first time we were shown anything to try to help us understand what was happening inside of her body. The white skeleton on the black background was my baby. A gray cloud covered where a lung should have been. He showed us several views of her chest, explained the procedure while I hid my face in Nick's fleece, and then we gave him the go ahead to start "right now."
We waited. Together. This time together was too intimate to share. It is for me to lock away in my stash of memories of things I absolutely love about my husband.
We received our first update after about 45 minutes. The tube was in, fluid poured out, it is going good so far. Another update 30 minutes later said he was finished and the team was giving her a central line. During this terrible waiting time we were flooded with prayers from friends, colleagues, and family. We can't thank you enough. Sometime that night we both closed our eyes in different rooms of the hospital.
At 4am Friday morning I awoke when the x-ray tech came into the room. I peered over my pillow while they moved her ever so gingerly to take the photo. I closed my eyes. An hour later Dr. Q asked me to follow him into the computer room so I grabbed Nick from down the hall and we sat, once again, with sandpaper eyes, in front of the large screen. This time two images were in front of us. One from 7:35 pm and the other from 4:11am. The new picture showed two lungs. One was nice and full of air, the other was still cloudy, but filled with air. Strange wires and tubes draped over the skeletal image like jewelry on a gypsy. Already we could see improvement. Then he showed us how much fluid has been collected from her lung. At this moment three white boxes are lined around the side of her bed on the floor, like cans at a fraternity house, to show how much fluid was consumed. Each box holds 200cc, the first two are completely full and closed off. The third is still slowly filling with the thick yellow fluid flowing from the tube in her side. Over 450cc from her one little lung.
So everyone is asking for updates but we really don't have any just yet. Her fever went up again today to 103 but they are controlling that with Tylenol every 4 hours. She stirred some today and I was able to look into her perfect blue eyes for a brief moment. Her mouth is full of tubes, a wire is going down her nose, there is tape holding the wires and tubes, but through all of that I was able to see her little dry lips form the most precious word in the whole world, "mommy." I just held her hand, stroked her hair, kissed her and told her how much she is loved. They said she can hear me. At one point she squeezed my hand as if to let me know that she knows I am by her side. In that instant my heart spilled over with love and broke at the same time.
Writing this helps. Texting and talking helps because in those moments I am not sitting here listening to the whiz and hum of machines. I don't hear occasional beeps or see tiny blinking lights. Somewhere down the hall Nick's eyes are closed. I think it is time for me to close mine as well. This is part of my soul on the screen and my heart is on the bed beside me.
*** update at 8:51am Saturday morning***
Her nurse just showed us the latest report. The LEFT lung (the healthier lung) is completely free of the affusion (yucky stuff). That is an improvement since we got here on Thursday! The RIGHT lung (unhealthy lung) is almost free of the fluid, another good sign, even though it is still infected. They increased her antibiotic from 300mg to 400mg last night so we will hopefully see some improvement in her blood count, fever, etc.
***update at 10:33am Saturday morning***
God is so good! Dr. Q arrived, met with us and showed us the x-rays. the black screen now showed two lungs full of air! Two normal sized lungs. He just took out the tube in her side that was draining fluid from the lungs and bandaged her up. Now they are taking her off of the sedation so that she can be weaned from the ventilator! Thank you Jesus!
As he stooped over her bedside preparing I prayed for wisdom, discretion, and steady hands for Dr. Q and Gene, our nurse. Dr. Q looked in my eyes, "You are brave." I wanted to tell him he is wrong, that I'm really scared out of my mind. I peered around his backside while he removed the tape, then I walked to the opposite side of her bed and held her hand, stroked her forehead, watched and prayed. I kept taking deep breaths and tried to bend my knees so they wouldn't lock up. I didn't want to fall out like a middle school choir kid at the first concert. Don't lock your knees.
His gloved hands worked steadily to snip the sutures and pull the thin white cord from her side. He showed me the size of the tube that was actually inside of her body - much smaller than the tube connected to the drain tubs. Breathe, Mama. "Jesus loves me" played softly from the CD player beside her bed. Again, God's provision. He stepped away from the bed, smiled up at me, checked the monitors and washed his hands. Then he placed the round end of the stethoscope to her chest. First the left side then the right. He smiled. "Decrease the sedation," he told the nurse, "Let's get her ready to remove the ventilator."
Did I hear him correctly? Remove the ventilator? You mean, she might be able to breathe on her own by tonight? She might be able to lock eyes with me and know how much she is loved? Yes, I heard him correctly.
I stood by her bed crying tears of joy and silently praising my ever present God. Dr. Q received a tight embrace from a happy Mama and then I went down the hall to tell Nick. We crossed the hall into the chapel and praised God for this miracle. We prayed for continued healing for our girl. We thanked Him for placing such amazing prayer warriors in our path. We thanked Him for competent doctors and nurses. We thanked Him for loving us and our family. God IS good. We know we are not completely in the clear but this is an amazing step in the right direction.
As I'm writing this post, Gene walks in and smiles at me. "You know this is a miracle right?" Yes, I know. "It is just amazing that he is taking her off of the ventilator so fast."
"Not too fast, right?" I queried.
"No. He is the best. Any other doctor would keep her on there for a lot longer. He is the best. You are lucky you got him."
"Not lucky. Blessed. That is God's provision for us." At this point those darned tears started again.
"This is a miracle. You know you could've lost her. Infection was that bad."
"I know," sniff, "You just don't want to let your mind go there. But we know and we are so grateful. Everyone in our town is praying for her."
"It works," he said. "It is powerful stuff. This is the good part about my job."
I am blessed and highly favored, as is my girl. My fightin' fiery curly headed cherub. I know we have a long road ahead of us. I know. But this is our miracle and I will never think of Easter the same. Each year I will not only celebrate the resurrection of Jesus, I will remember this fight. This fear. And this miracle.
***update at 12:44 Saturday***
They successfully removed the ventilator and she is breathing on her own. She is still receiving oxygen through the canula (nose tube). She has opened her precious blue eyes, she is trying to speak to us, she is resting.
***update 4:07 Saturday***
About 30 minutes after the previous post Harper took a step backwards. The xray they took after removing the tubes looked worse than the one this morning that gave the doctor the confidence to remove them. It has been a scary afternoon. Such a dramatic high followed by a terrifying low. Hope and fear. PLEASE continue to pray for healing for Harper. She IS a fighter. We need prayer!!
***update 4:19 Saturday***
Our amazing nurse, Gene, just called Dr. Q to ask about Harper. Dr. Q said that he expected some fluid to become evident in her lung and that his plan is for her to expel it by coughing. When she wakes up from her rest and is completely off of the sedation she will wear a vibrating vest to help loosed the schmagma in her lungs. Then he wants her to try to stand up and walk around to help her cough it up. The good news is that the doctor is not surprised, he expected it, and he has a plan for her. It has been a very long, taxing afternoon. I cried on my own mama's shoulder and to be honest, it felt so good. I needed to be loved on for a second. I'm still her baby girl and it is hard to believe that she loves me the way I love Harper Leigh. We appreciate all of the love, support and prayers. Please don't stop.
***update 7:41pm Saturday***
We have had a positive evening. Dr. Q came to our room to reassure us that she is doing fine. According to him she is in recovery mode. We are by no means in the clear, but we are so much better than we were earlier this afternoon. A lot of that has to do with removal of fear due to his thorough explanations, which included a diagram of the lungs and how they work. Now we need the antibiotics to fight off all of the infection and build up her strength. If you need a mental picture of her progress this is the best I can do as tired as I am: she stood with assistance to move to a chair for about an hour. She ate a red popcicle (only after she stuck out her bottom lip when we presented her with an orange one), she drank some water through a straw. She let me know that she wanted the Tinker Bell blanket I was using instead of the white hospital blanket. She told us she wants to go to the beach. She pointed at the TV when she saw the Wizard of Oz. She is fighting her battle.
Nick and I are crumpled together now on the couch by her bed looking across the room at our blessing, our little miracle. We are tired. Again, we want to thank everyone for the prayers. Prayer changes things and we believe this now more than ever. Resting now.
Please continue to pray and I will add updates to the bottom of this post as we get them.
Wednesday, April 20, 2011
Harper
It started with a fever last Friday and the fever is still running rampant in my little girl's body. Then the cough started. A shallow tick tick ticking of a cough that sounds like a failed pull on a weedeater before you really get it cranked up an running.
Now we know it is pneumonia. This is hard but I'm comforted knowing God is in control and I am not. Please pray for Harper. Not sure when we will get to come home, but it won't be today.
Now we know it is pneumonia. This is hard but I'm comforted knowing God is in control and I am not. Please pray for Harper. Not sure when we will get to come home, but it won't be today.
Sunday, April 17, 2011
KDZDY@DAPRK
Last weekend Jana Beck and her crew organized an amazing fundraiser for Legacy Park, Kids Day at the Park. My girlfriends from Texas, the best state ever, drove over to spend some QT and get some exercise. However, I had both of my kids and Dara brought her daughter, Chloe, so Jaime is the only one that got her heart rate up. Well, that's not entirely true. We did take turns toting the girls around the lake piggy-back style and I know my heart was pounding!
All in all we had a great time! Me and my home girls laughed and talked and posed. After we left the park to chow down at Waffle House, they announced that the park received a grant and will start construction this fall! Woo hoo! I'm thinking Kids Day is our new memory makin' tradition.
Harper Leigh and Me
(our team headbands courtesy of Jaime, the Scentsy Queen - the wick is wack, yo!)
Harper, Dara & Chloe
Mommy and Baylor Kate
Chloe and Harper...actually had the exact same shirt and shorts...twinkies!
you can tell we've really grown up a lot since high school...H97!
All in all we had a great time! Me and my home girls laughed and talked and posed. After we left the park to chow down at Waffle House, they announced that the park received a grant and will start construction this fall! Woo hoo! I'm thinking Kids Day is our new memory makin' tradition.
Harper Leigh and Me
(our team headbands courtesy of Jaime, the Scentsy Queen - the wick is wack, yo!)
Harper, Dara & Chloe
Mommy and Baylor Kate
Chloe and Harper...actually had the exact same shirt and shorts...twinkies!
you can tell we've really grown up a lot since high school...H97!
Sunday, March 27, 2011
KFW
A few weekends ago we had the luxury of a Kids Free Weekend! Thanks Mom. Nick and I have been accused of being squares, and I guess if you judged us by this KFW, then all four sides are equal and we fit the mold.
nice socks n slippers!
True love! After a nice evening on the porch we dined at RAW, sipped at Starbucks and wanted to really make the most of the KFW so we made a guest appearance at DHS prom! Holla!
****************************************
AFTER: repurposed frame (it was a gold mirror but the glass shattered), red spray paint, a cut piece of plywood and black board paint and voila....a cheery welcome! I also painted a metal frame and wire storage basket red to add some unity in this area of the house. So fun!
(still need to take out hooks from bird prints, please ignore!)
nice socks n slippers!
True love! After a nice evening on the porch we dined at RAW, sipped at Starbucks and wanted to really make the most of the KFW so we made a guest appearance at DHS prom! Holla!****************************************
Using inspiration from my favorite blog (kellehampton) I decided to add a punchacolor to my breakfast nook! Before: 6 bird prints in black frames
AFTER: repurposed frame (it was a gold mirror but the glass shattered), red spray paint, a cut piece of plywood and black board paint and voila....a cheery welcome! I also painted a metal frame and wire storage basket red to add some unity in this area of the house. So fun!
(still need to take out hooks from bird prints, please ignore!)
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