Pedi Home Health- My time with Joseph

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    This is a story about my experience with a special patient I had as a Pediatric Home Health nurse. There is always one patient that will forever remain in your heart. This is my story about my time with Joseph and how I dealt with his death.

    Pedi Home Health- My time with Joseph

    I had been working with medically fragile kids for over 10 years and while all of my patients were special to me, this one was different. I had been hearing about this "walkie-talkie" five-year-old boy for months, we'll call him Joseph. I was intrigued by the stories of Joseph and itching to get the chance to work with him, when finally my day came. I walked into a room full of sponge bob, spider man and every kind of video game, puzzle and book you could ever think of. Sitting smack dab in the middle of all these toys was a small, chubby cheeked, cutie pie with a trach in his neck and a ventilator attached. He immediately looked up at me, and with an Alvin the chipmunk voice, gave me a squeaky and cheery "Hi! Are you my new nurse?" I was amazed by him in that instant.

    I obtained report from the day nurse and a quick orientation and was left alone with this special little man. As I was starting my notes and talking with him, I nonchalantly asked him his trach type and size. He immediately replied, "Bivona 4.5 uncuffed." Wow! This was a smart kiddo I had on my hands that knew his stuff! He even knew all of his meds by the color and amount in the syringes! By the end of my first shift, even after he whooped my butt at memory, I was hooked. I called my agency and begged to be his full time nurse.

    I quickly learned all of the words to Sonic Underground and how to play a mean air guitar. After all what good would a nurse be to this little guy if she couldn't play air guitar in his band? He loved pinching my nose in his tiny hands and tossing it into his mouth right after screeching, "Got your nose!" Water gun fights were a daily occurrence and it seemed to be the end of the world if the internet wasn't working and he couldn't play his Scooby Doo Mystery Game. He went back and forth on whether he thought he was a baby or a big boy. One day he might be dressing himself, brushing his own teeth and even holding his trach in place while I changed the ties. The next day he may be in baby mode and want every little thing done for him, including his blanket moved to the perfect position. You never knew what mood he was going to be in. He could be the sweetest kid that ever lived telling you he loves you, you are beautiful and giving you hugs and kisses left and right. Within five minutes without anything seeming to change, he could hate your guts while giving you a mean dirty look and sticking strongly to the silent treatment. He knew what he wanted and he knew how to work the nurses to get it. And of course, we gave in every time.

    Several days into working with Joseph, I realized just how sick he was. His trach secretions could go from white to boogery brown within hours. His poor little body shook with pain when he'd have a coughing fit. We kept him on 2-5 lpms to maintain his oxygen above 94%, but this often wasn't enough. We had to wake him every 2 hours to put him through IPV treatments that were extremely painful for his frail body. He'd beg us to skip the treatment saying, "No Manda, just hold me." My heart ached for what he was feeling. He'd spent his entire life going in and out of the hospital every couple of months. He had two families that loved him dearly, one at home and one in the hospital.

    He'd wake up many nights asking to be held. I'd pull him onto my lap and he'd swing his tiny arms around my neck, snuggling his face into my neck. Those are the moments I lived for. He needed me and I needed him.

    At a time of my life when I was feeling alone and lost, Joseph kept me going. I had moved halfway across the country, away from my family and friends for a relationship that was now failing. Joseph was my light in this dark time. He was the reason for me being away from everything and everyone that I knew and loved. I was with him 48-60 hours a week. I'd drop plans in a heartbeat and drive the hour to his house if he needed a nurse. He was my baby. My heart was consumed with love for this tiny child and he was all I could seem to talk about. My family and friends back home asked about him every time they called and my mom and sister even had the chance to speak to him on the phone several times. He was a ham that loved the attention.

    The first time I received a middle of the night call, I was in disbelief. iI had just gone to bed when my phone rang. It was Joseph's mom. Joseph had been in the hospital for a couple weeks with a lung infection. As soon as I answered the phone, I immediately knew something was wrong. His mom had received a call from the hospital saying they didn't think he would make it through the night and she was on her way to be by his side. She needed me there also. Within minutes I was in my truck and flying down the freeway to get to my little man. I called my mom on the way crying hysterically, saying that I wasn't ready to lose him yet. I parked my truck in the first spot I saw and ran through the hospital to the 3rd floor. I slowed down before entering his room, afraid of what I'd find. It was odd, I heard laughing. I walked in and saw a drugged up looking Joseph sitting up on his bed smiling.

    "Hi Manda!" Confused but relieved, I swooped him up in a tight hug, snuggled my nose into his neck and breathed deeply his sweet smell. After a few happy tears I walked out to the nurses' station to get a report of what happened. Apparently he'd became very lethargic in the early hours of the night and they thought they were losing him. After a trach change and an IPV treatment he was back to good. Phew! That was one of several scares. I was amazed at the resilience of this boy.

    Christmas came and Joseph was home. Santa came to his house and Joseph sat on his lap and belted out his long list of toys he didn't yet have. Christmas day was filled with toys and wrapping paper but he soon tired and needed to return to his room for a nap.

    The months went on and Joseph continued to be in and out of the hospital with either pneumonia or pseudomonas. He signed up for his make-a-wish and Morgan's Wonderland was all he could talk about for weeks. He rarely was able to go outdoors, unless to head to a doctors appointment or a trip to the ER. Joseph was elated at the thoughts of trains and merry go rounds. When the weekend came for his trip, he wasn't feeling too well. He was taken to the doctor and told he'd have to miss his trip. he was just too fragile. We were all bummed for him. He deserved to go. In an attempt to cheer him up, I decided to paint his room from the boring white that it was to a bright sponge bob blue.

    It was Joseph's 6th birthday and it was his first birthday home. We celebrated with cake and candles --not the smartest idea considering her was on oxygen-- and lots of presents. I finished painting his room the next week and we planned on moving him from his temporary spot in the living room, to his new blue room the next day.

    It was 10am and the physical therapist was at the house helping Joseph walk across the room. After she left he was exhausted and just wanted to rest. By 11am I realized something wasn't right. He was whining and crying, which wasn't typical. He wouldn't let me out of his sight and he just kept saying how tired he was. As soon as I left the room to retrieve his meds, he lost it. He started crying hysterically and his oxygen immediately began dropping.

    I first tried calming him, but he automatically started calling out orders between sobs. "Suction me Manda!" Done. "Change my trach!" Done. "My vent isn't working!" I had his mom ambu bag him to help him breathe while I tried trouble shooting the vent, which was working correctly. By now we were up to 10lpms and his oxygen saturation's were in the 70's.

    There is only one thing left to do when nothing else is working to sustain your patients vitals. I picked up the phone and dialed 911 for the first time in my life. "I have a baby here on a ventilator and I cannot keep his oxygen saturation's up. Please send someone now."

    [font=&amp]joseph looked up at me with anger in his eyes and though gasping for air he managed to yell out, "i'm a big boy!" i quickly corrected myself to the 911 operator and hung up the phone. thankfully, within mere seconds the paramedics arrived.

    The 30 minute ride to the emergency room seemed to take forever. The paramedic knew Joseph and knew that the situation wasn't a good one. My little baby kept his big, scared eyes focused on me through gasps, trying to get oxygen into his lungs.

    "A home is a home, home is wherever Im with you. Apples, peaches, pumpkin pie, you're the apple of my eye. I ain't nothin without you."

    I kept singing our song as I clutched his hands and tried to keep myself together. Soon his beautiful eyes turned red and he slipped into an unconscious state. My baby, my silly pants, sponge bob loving little man was limp in front of me. "home is wherever I'm with you.... don't leave me baby."

    Even with sirens blaring and the ambulance driver flying down the freeway, I felt like we'd never get to the hospital. Upon pulling up to the ER there was a crowd of medical staff waiting for us. Joseph was somewhat of a celebrity in the pediatric medical community. He was a light in all of our lives and everyone seemed to be available in that moment to help him. Once in the trauma room I stayed by his side.

    "A home is a home. Home is wherever I'm with you. Please don't leave me little man. I need you."

    The doctors, nurses, and respiratory therapists all worked around me. His mom was not at the hospital yet and the doctor kept asking for his DNR (do not resuscitate) order.

    "Everything but compressions. Do everything you can but compressions."

    I kept trying to tell them what the DNR said and that his mom would be there with it soon. His little body was so limp on the gurney. His eyes no longer bright, happy and alive. My heart was breaking. "Home is wherever I'm with you."

    Soon his mom arrived and stood in the hallway looking in with disbelief. I ran to her and we wrapped our arms around each other.

    "What did I do to our baby?? I don't know what happened. He was fine this morning. What did I do to him??", I asked through sobs.

    With a loving and stern look she grabbed my shoulders, gave me a gentle shake and said, "You didn't do this. Joesph is a sick little boy and it wasn't anything you did or didn't do to bring us here."

    At that moment I swore off nursing. I can't do this the rest of my life. Too much responsibility. Too much sadness.

    We went back to Joseph's side and each took a hand in our own as the doctors worked around us.

    "A home is a home. Home is wherever I'm with you. Don't leave us baby boy."

    Within approximately 15 minutes after arriving in the ER, the chest x-ray results were available. It was a collapsed lung. The doctor inserted a chest tube and we waited as his O2 saturation's began to slowly climb and his heart rate stabilized. We were transferred up to the pediatric intensive care unit and were still in shock from the happenings of the previous hour.

    I was standing in the hallway with his mom as the nurses and doctors got his ventilator, suction machine, 02 and all other tubes and monitors situated on his tiny, limp body. I remember telling the nurse the meds he was on as I kept my eyes trained on Joseph lying in the bed.

    Then it happened,I saw his hand move. Thinking it was a reflex, I didn't get my hopes up. Then he moved his head and opened his eyes. I ran to his side, threw my arms around him and cried tears of joy and sweet relief.

    He looked from me to his mom and all over the room. He couldn't talk due to being on a different ventilator than his normal home vent. Being the amazing, resilient kid that he is, he immediately pointed to the tv and mouthed the words "Sponge Bob." Although turning on the TV wasn't a priority for any of us at the moment, we did as Joseph said and turned on Sponge Bob for him right away. Next thing i know, he was grabbing at my nose and tossing it in his mouth. "Got your nose!" he mouthed! Always finding a way to make everyone around him feel better, this little boy melted my heart for the millionth time in that moment.

    We left the hospital that night knowing that Joseph was in good hands and feeling as though we dodged yet another bullet. I was scheduled to leave for California to see my family that next day and was feeling unsure about whether I should still go. Since first starting work with Joseph, I knew that I wanted to be a constant in his life. I wanted to be a nurse that he could depend on. I also wanted to be with him when he passed away. Up until the moment my plane took off the ground, I was on edge about whether I should go or not.

    The morning of my flight I spent in the hospital with him in my arms. He slept on me for several hours, clutching tighter to me with every little move I made to try to readjust my body in the awkward position it was in on his hospital bed. Still being unable to talk due to the vent, I did the talking. Ever since months prior when we thought we were going to lose him, Joseph had been seeing "monsters." He said they would be near him in his bed and came around every time he had a coughing fit or didn't feel well. For months we hadn't known how to calm his fears of these monsters or what to tell him to make him feel safe.

    In this moment in the hospital with him in my arms, recalling the terrible, scary ambulance ride to the ER the day before, it came to me. I moved Joseph into a position where I could see his face and had him look in my eyes.

    "Last night an angel came to me Joseph. Angels are special people with big, beautiful wings that protect other people. These angels told me that they are looking over you. They wanted me to tell you that you have nothing to be afraid of. The angels come around to help you when you are scared and hurting. When you are ready and feel comfortable with these angels, you can go with them. The angels can take you to a place where you won't be sick anymore. A place where you can run, and laugh and play without coughing and without hurting. One day we will all go with the angels. Me, mommy, all the other nurses and everyone you love will meet you in heaven one day.

    "The angels will take you to heaven when you are ready and you can be a happy, healthy big boy and wait for the rest of us to come see you. Joseph, you weren't seeing monsters all those times, baby. You were seeing angels. Don't be afraid of them. Go with them when you are ready, be a free and happy big boy. We will all see you there one day."

    I don't know how much he understood, but I saw his eyes soften. He looked at me, kissed my cheek, nodded his head as if to say "OK" and wrapped his tiny arms back around my neck. We sat that way snuggling for another hour, until the very last second when I had to leave and catch my flight. I gave him big kisses and told him several hundred times how much I loved him and how proud I was of him for being so brave.

    "A home is a home. Home is wherever I'm with you." Then I left.

    I was in San Diego for 4 days, calling the hospital and Joseph's mom several times a day for updates. Things were touch and go, but he was a strong kid, a fighter, a resilient boy with the heart of gold that was loved by every person that ever came into contact with him.

    He was also a tired boy. On july 11, 2011 at two o'clock in the morning, Joseph went with the angels. I received the call from his mom. Waking up, I looked at my phone, realized who was calling and answered it without saying anything. I didn't have to say a word, and neither did she. I knew my baby was gone.

    Within hours I was on a flight back to Texas. I had to be there, I had to be near Joseph and see his mom. Words cannot explain the grief I felt for the following weeks. Joseph, a foster child, was a member of Native American tribe that required his body be taken from the hospital soon after his passing. He was laid to rest in sacred ground , and we were not permitted to attend his burial. I still don't know where his precious body lies.

    As nurse I open my heart to fragile lives. I do my job and try my best to keep my patients as happy, healthy and comfortable as possible. I am constantly losing patients either from them getting better and moving forward in their lives or by them passing away. Each patient leaves a mark on my tender heart and I hope that I have also touched their lives. Being a pediatric nurse is the most important thing in my life. I am honored to be able to care for these precious angels in waiting.

    Although I have seen many of my tiny patients pass away, Joseph has been the one that left the largest impression on my heart. It's been a year since he left this world, but there isn't a second of any day that goes by that I do not think of him and feel him near me. He taught me how to have fun, love, be patient, have hope and most importantly, he showed me that even the tiniest, weakest bodies can have super human strength. I will forever hold him in my heart and be eternally grateful for the year that I was able to spend with him.

    "Apples, peaches, pumpkin pie, you're the apple of my eye. I ain't nothin without you. A home is a home. Home is where ever I'm with you."

    I love you precious boy. Forever in my heart.

    *The patient's name has been changed keep confidential.
    Last edit by tnbutterfly on Sep 5, '15
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    About ibmanda2000

    I have been working Pedi Home Health an LVN in Texas for nearly 3 year now. I am originally from California and have been in the medical field for 11 years.

    Joined: Apr '09; Posts: 38; Likes: 45
    Pediatric Home health; from US
    Specialty: 5+ year(s) of experience in Peds, Hospice, Home Health, Dementia

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  3. by   Blanca R
    I was crying to the very end.

    thank you for sharing such a wonderful story with all of us

    many many (((hugs)))
  4. by   tnbutterfly
    I also was crying. Thanks for sharing your story about a special little guy. He touched the hearts of many.
  5. by   suzannaprz
    I have tears running down my face. May he rest in peace. Keep him in your heart always because thats his new home.
  6. by   Brookelin
    That was a beautiful story...thank you for sharing it. It's people like you that make a difference in these childrens lives and he was lucky to have a nurse that loved him and cared for him so well.
  7. by   Esme12
    I am balling like a baby.... I have always felt I was the one that was more privileged to be allowed in to their you too have a guardian angel.
  8. by   nursel56
    Beautiful story. I can relate to it completely. :redpinkhe
  9. by   realnursealso/LPN
    I lost a special little patient a few months ago. Hugs to you from me. Never forget how much nurses like us mean to the Mom's and Dad's, as well as our little ones. The hurt stays a long time, but the memories make it better. God Bless, as you continue on the path that lays before you.
  10. by   Lynstat1
    A sad story and all that, but from an Australian nursing perspective, you have well and truly breached your professional boundaries by becoming so over-involved emotionally with the family. IMHO the nursing care you deliver is not professional nor is it providing patient and family centered care, rather you are fulfilling your own need to be needed.
  11. by   nursel56
    --decided not to contribute to an unnecessary detour from the OP's purpose--
    Last edit by nursel56 on Jun 22, '12
  12. by   sharpeimom
    hugs to you, manda. you did just exactly what you were intended to do. not only did you bring love,
    comfort, security, and laughter to a sweet little boy, you were there for his parents as well. you did a fantastic

    there are tears running down my face as i type.
  13. by   cjcsoon2bnp
    That story is amazing.

    For me this represents the essence of what pediatric nursing is and should be...

  14. by   xoemmylouox
    I had a similar experience with a child. It is different with children. Nursing boundaries are stretched. You become a member of the family when you are with them every day, through the good and bad. It happens. We are so lucky to be able to make that difference in their life.