When I first began working with Baby he didn't have very many words in his vocabulary but did alot of pointing and grunting. Needless to say those that know me, know that I would talk to the wall if it would talk back. So I was going to get this little boy to talking. One of his favorite games was to knock one of his toys off his small little play desk that he sat at in his child size recliner, then point and grunt until the nurse fetched it. Guess we were his puppy dog, and he loved to play fetch. Well one day I finally got tired of fetch and told him if he wouldn't tell me what he wanted I didn't know what to get. So he sat there one day just a pointing away and I would not fetch. So he popped off "Panny, car". Completely took me by surprise and I fetched the car. After that his vocabulary improve. He never could get the e in my name, and his family loved how he called my Panny instead of Penny, and they too would at times teasingly call me Panny also.
A couple of years had passed and his family became fonder of me and I of them. During the summer time after Baby's AM care and treatments we would head to the living room to watch tv and spend time with his family. His sister always watched her spanish Soap Operas, and I would be left wondering what was going on so if I couldn't follow I would ask her to explain. One day she was gone but Baby's father was there watching the Soap Opera, and I became ingrossed in the plot not paying attention that he was talking to me. If it wasn't Baby talking I kind of tuned the family out at times because they were usually talking to each other in Spanish and I had no clue what was being said. After a few minutes it hit me, "Is he talking to me". Baby's father sat in his chair laughing, "You understand more Spanish then you let on Hey?" Oh no I was so embarassed here he had caught me staring off into tv land. "No" I said "your daughter usually keeps me updated on what is going on. I've just been trying to follow the action." Don't think he believed me much after that about not knowing Spanish, at least that is what he liked to tease me about.
One morning I was getting Baby ready for school and his family would come in in the mornings to greet him before they left for the day, and I listened to his mother lovingly talk to him, then the tone turned teasing and she called him Mandona. A few more times over the next few weeks I heard her again call him "Mandona" so I asked her "What does that mean?" She smiled and told me "I am calling him Bossy". OH BOY a new word. I liked new words that I could remember. Mostly I knew the Spanish word for spit, school, some colors (which I learned from watching Dora the Explorer with him) count to ten, oh and also red boot, which actually one of the cousins was teaching me I think hoping I would screw up like the last nurse he tried to teach how to say red boot, and it came out a bad word red *****, he was disappointed that I got it right.
Well after learning my new word "Mandona" I used it often when he would try to start bossing me around some. Then it became a game with us. He would get bossy I would say "Ok Mandona" and he would say back "I no Mandona, you Mandona" and the Mandona contest was on. We would argue back and forth who the bigger Mandona was.
When he was 8 he got a Make-A-Wish and was awarded a trip to Disney World. I was honored when his family choose me to go with him. I had been twice when I was kid, so now I was nurse, tour guide and chauffer since the family didn't read English well enough to navigate the street signs. They probably regretted the night I got us lost. Daytime driving was fine, but I hate driving at night, and we had stayed late to watch the fireworks at Epcot. Needless to say I got us turned all around, Baby's vent started beeping saying the battery was running low and I had no idea where we where. Finally I found a cop and he told me where to go, but we missed our turn and I figured I'd get off on the next exit and turn back around to get back on the right road. But the road I got off on didn't have a on ramp the way I went. Now the 3 teenaged boys are in the back of the van speaking Spanish and laughing some, Baby's vent is beeping at us more and I lost it. "I know WE ARE LOST, I'M TRYING MY BEST TO GET US BACK. STOP TALKING ABOUT IT." Now dad pops off, "see I knew you knew more Spanish then you let on" with a big grin on his face. That kind of lightens the mood, plus then seeing the cops in the road trying to chase down a bull that has escaped his fence. Didn't think that would be a good time to ask for directions, so I get on the phone with the place we where staying, tell them my location as best as possible when my phone goes dead, no signal. Could this night get any worse. So I wait a little bit checking my signal bar every mile I go. Finally 3 bars, and I call Give kids the World again. The receptionist picks up "Oh thank God its you, we checked the map. Just keep heading straight and you should come right to our rode from the backside". Sure enough in ten minutes, we spotted the rode to the village. I loved seeing Disney through Baby's eyes it was just so magical, but I was never so glad to get back home also.
About a year later in the summer of 2004, I moved to another town, but it was still the same distance to his house. But in this new town was the opportunity to go to college and get my RN. It was hard saying goodbye to working full time with him, but I would go back once a month to work with him. Each time I was greeted the same, "Where you been Mandona? I miss you. I love you." My heart would break, "I am not the mandona you are. And I'm in school. But I miss and love you too Baby."
I intended to go back and work with him full time once I finished school in 2006, but my body had other plans. In February of 2005, I had to have bilateral inguanal hernias repaired. I could no longer go back to pulling and lifting on my 80 lb Mandona. That was the hardest thing to tell his mother that I would not be back. After finishing school I got a full-time job in the Nursery, where the heaviest patient I have lifted is an 11 pounder. It was in the Nursery that I got the worse news of my life.
As I sat at my computer charting my 10 pm rounds, I overheard the conversation between the nurse I was working with and the RT.
Nurse "Who was it that you all airlifted out of here earlier tonight?"
RT "Oh it was a home ventilator patient around 10 years old."
My heart sank. Could it be Baby? I type his name in the computer and it shows that he had been in the ER tonight. Tears well up in my eyes. The nurse asks me what is wrong, and I explain that the little boy in question might be my former patient. I try to call his home, no answer. I call the cell phone number I had, voice mail. My heart is breaking at this time. I try to calm myself. He has been flown to the Children's hospital before. He probably has pneumonia again. The phone rings and it is one of his brothers. I ask what is going on. He states he doesn't know, that he is at home and his parents took Baby to the hospital. He gives me another cell number to try. I call it and receive a voicemail, I leave a message as calmly as I can "Hi this is Penny. I was calling to check on Baby, when you get a chance please give me a call."
All night I wait and hear no answer. I go home that morning and go to bed.
10 am I get the call I do not want to hear. "Penny, Its M****, he's coding. I don't know if he makes it. He has no blood pressure." We cry together over the phone. "I'm on my way."
I call my mother since I have not had much sleep and she drives me an hour away to the Children's hospital. I did not know if or when I got there if he would still be there, but I had to go. When I arrive he is still with us. His mother and I talk about his condition. She tells me how she does not wish to see her son suffer anymore but does not want him to go either. We visited for an hour, but I knew if he were to die that his parents would want to be with him and since only 2 could be back with him at a time I was taking his fathers time away from him. I kissed my little Mandona bye, told him I loved him and in a weak voice I heard "Yeah".
6 pm that night I get the call. My little Madona had passed on. My heart broke. I attended the services and was honored when his family wanted me to sit up there with the family at the graveside.
I still keep in touch with his family and am honored to call them my family.
