We complain about traffic, long lines, and having to buy a few more presents. We complain about wrapping. We whine about baking. We complain about being with the family members who sometimes just don't feel like family. We run around like mad, all going insane, not even thinking of how this should be a peaceful, holy, time. A time of unbelievably beautiful joy.
Watch this. I am an active supporter of St. Jude's Research Hospital, and they believe in peace and hope, the sanctity of each moment, and all the things we so easily forget at this time of year.
These angels, of all people, have the right to be sad at Christmastime. But no, to them, it's not even an option. Look at their little faces - they are so happy, sharing so much joy! They just believe. Believe in love. Believe in Christmas. Believe in miracles. Believe they have a lot to be thankful for. Believe that they can have joy even through they may be dying.
Shame on us. What's it going to take for some of us to find that true joy, that strong belief?
God bless these precious little angels. They, even in their conditions, have blessed us all. To me, that's honorable. It's beautiful.
Do you all remember my little Julenia? (Click to see her picture and read about how we are in each other's lives.) Well, I received a letter from her this week, just as I was wondering how I'd be able to pay her monthly sponsorship fee with all the Christmas spending going on. I felt so selfish as I read her mother's letter and saw her little picture. I quickly realized that no sacrifice was worth more than her. I remembered why I do this. Because I want to, because I love her, because it's a little way that God can use my tiny little hands in a huge way.
I think about Julenia all the time and pray for her daily. My money helps feed and clothe her, and it provides her the opportunity to go to school and a church that teaches her that Jesus loves her. It shows her that some people in America are praying for her and are genuinely interested in her precious little life. Can I please ask you to remember Julenia and her parents in your prayers this season? Those children have nothing down in Nicaragua, and they get so excited over every little thing our money helps provide them. Sometimes it's a new pair of shoes, sometimes it's a treat, and sometimes it's a hug from the workers in their special schools and care centers. It's sobering to hear about their lives, and it's gratifying to know such a small amount of money sacrificed on our parts can make such a huge difference in the life of a child, and thus, an entire family.
Meet Umunyana Diane from Rwanda. She desperately needs a sponsor. I have a picture of her and a calendar of things to pray for, a goal of finding her someone to let her know she is a valued child of God. She is 8 years old and lives with her aunt. She is responsible for carrying water and running errands. Her aunt is sometimes employed as a farmer, and there are five children in her family. As part of Compassion's ministry, Umuyana participates in church activities. She is also in primary school where her performance is average. Jumping rope and running are her favorite activities.
If you feel it on your heart to consider sponsoring Umunyana and corresponding with her, please email me at agmcgaha[at]gmail (with your address) or even post a comment below just to say you're praying for her and sweet Julenia. If you'd like to learn more about Umunyana, Compassion sent me some pictures and info about her that I can distribute in hopes of finding a sponsor. This is not a contest to see who can get a child sponsored, and I get no compensation for you to "adopt" her - just gratitude, joy, and renewed hope. Sponsoring Julenia has, like I said, been a huge blessing in my live. I live for her letters and updated photos, and the staff at Compassion is so, well, compassionate and wonderful to work with. You will be making a difference in the life of your child, her family, her community, and every life she grows up to touch. It's amazing, humbling, and so fulfilling.
Please pray for these two little girls, both growing up across the world from each other and from us. You'd be in awe if you saw how much they don't have, what they won't get for Christmas, but little Julenia knows her sponsor loves her, and she knows she has Jesus this Christmas. Join me in praying that Umunyana will soon know the same joy.
Jesus loves the little children, all the children of the world... Did you ever sing that as a child? I did. And I sing it to L Bug every day when I tuck her into bed for nap. It's funny how like myself at her age, she loves such a simple little song, but there is no denying - the words are true. Pray that these children know and grow in Him.
Merry Christmas. Be grateful for every. little. thing.
We talked about Santa last week. We watched the Santa movie today. We went over all of the facts, details, and things to know. Like be a good girl, make a list, tell Santa what you want, go to bed early on Christmas, Santa comes..... So much excitement for a little girl who was barely a year old for her last Christmas!
L Bug was psyched to see Santa.
Nanny was bored, so hey, that worked with me. Got my bugs ready, loaded them into the car, and a half hour later, we were off. We drove up to Beachwood so Miss Amanda could also pickup a 2010 refill for her Coach datebook. ;-) Anyhow, the 20 minute drive was filled with L Bug asking the most random questions and then asking "WHY??" "Well, because it's cold outside." "But WHY??" "Because it's winter." "But WHY??" Sometimes you run out of creativity and just have to start ignoring "Whys" at a certain point! (Or it's possible to get to the point of wanting to scream at the top of your lungs. That one requires a lot of self control, though!) So 1000 "Why??"s interlaced with a fussy Baby Bug, and I was so excited when we finally got to the mail.
Until I took the double stroller out.
Now, my fiance sweetly put this together for me but I'm guessing I probably said something along the lines of, "No, don't show me how to open it - I'll figure it out" after he offered to demonstrate it to me. Right. I fought with it for about 15 minutes with both girls still in the warm car - L Bug screaming random things and Baby Bug screaming her head off (she hasn't mastered the art of retaining her own pacifier). I became so desperate that I asked 2 complete strangers to help me. (Neither had a clue.) It was freezing, and I hate strollers. So I give in and call the fiance. (He probably rolled his eyes and remembers wanting to show me how to do it in the first place) and he so sweetly downloaded manuals and Googled until I finally found some random lever that released the entire crazy fancy contraption into a whoa- big, long double stroller! Snapped it into place, put L Bug in the front with a snack, put Baby Bug in the back with a blanket, everyone buckled in tight, and off we went.
Good thing we were parked at Saks Fifth Avenue because the doorman saw me coming. (Macy's does not have doormen.) He got the doors for me as I drove around this ginormous stroller contraption for the very first time. After all, this was our first real going-somewhere outing with bothL Bug and the new baby!
"Look, there's Santa!" I told L Bug. "NOOOOOOOO!!!" I told her something about how nice Santa was, blah blah blah, and decided it would be a good idea to run to Coach and save Santa for last.
Coach done. L Bug having a panic attack about Santa. Nice Coach lady tells L Bug how amazing Santa is. L Bug didn't buy it.
Sooooo we get up to the big jolly man who must have been the real Santa because he was just perfect. He was so nice and tried to calm L Bug, but to no avail. She held onto every side or piece of the stroller she could, screaming and kicking. Meanwhile, one of Santa's helpers had given Baby Bug to Santa, and she was having a blast just sitting on his lap playing with her fingers and making faces. "See, your sister is having fun with Santa. I bet she told him what she wants for Christmas. How will Santa know what to get you if you don't tell him?" Skip ahead like 10 minutes and I finally get the kid out of the stroller, into my arms, digging herself into me, "NOOOOO SANNNNNTAAAAA!!!" Hoping I'm not traumatizing her for a lifetime of fearing Santa like some kids fear clowns, I sat down next to Santa and told him what I wanted for Christmas. He then asked L Bug what she wanted. She played shy and just looked at him. "A dolly?" "You love baby dolls, L Bug!!" Her eyes got big. Still red and wet, but big. Then Santa's helpers said they were going to take the picture. 1-2-3, L Bug was ready to bolt as soon as the shutter went down. Santa gave her a lollipop and said to have a MERRY CHRISTMAS!! L Bug did not want the lollipop and did not wave bye-bye to Santa. I did.
Then the whole way home, L Bug cries "My coat.... I don't like my coat...." then "My boo boo, I pinched my boo boo....." then "Snack.... I need a snack....." (ok, more like "Nack, nanana, whiiiiiine, but you get the idea) Baby Bug has meanwhile fallen asleep (yes, amongst her sister's noise- how? I have no idea) and L Bug is just going on and on about how she hates her coat and her booooo boooo and where is her bunnnnnnny.....
We finally got home, and had lunch, over which L Bug excitedly told me "Santa is bringing a big doll to my house!!" (Santa, ahem?)
Yesterday I was dreaming on the highway. It was around 6:30am and I envisioned myself side-swiping the truck next to me. When I got home about 12 hours later, I realized it wasn't a dream. Go look at my car if you don't believe me.
Tonight I had my girls so Mom and Dad could go to a charity function. My tiniest (10 weeks) decided she wasn't going to go to sleep, so I rocked her back and forth, back and forth. Seconds turned to minutes, minutes turned to hours, back and forth, back and forth. Then, as my heart was breaking deeper and deeper, all of a sudden, it happened again.
The dreaming, I mean.
This same nursery was all of a sudden in my own home. A beautiful wood crib, a dresser, a sweet little lamp, and those coos that can stop you dead in your tracks. There was a baby here. Finally.
I closed my eyes, and I was in the suede/microfiber rocking chair and ottoman set that I have in my basement all ready for when this life finally happens.
Back and forth, back and forth.
The door was ajar, the tiniest bit of light peeking through. It widened, and I looked up.
Jonathan came in.
I looked down into my arms at this precious manifestation of love, hope, and sheer miracle, and then my eyes met the ones I loved first. He kissed me softly before peering down at our daughter and kissing her forehead. He didn't have to speak a word. His eyes said every feeling in his heart.
And that was it.
Then my heart was ripped out again as I realized that dream may never be reality. Sure, I can dream of getting hit on the highway and that will come true, but the most honest, purest of things? I can dream it every single night, and yet I'm still here alone, yearning, grieving.
A long time ago, many different people told a pained, confused little girl that Jesus loved the little children, all the children of the world. Their eyes looked so sure. Maybe they were. Or maybe the little girl was still too naive to know any different.
It didn't take long for her to realize that those children grow up. And then what? Are they lonely like me? Why?
Did you know that a child's leukemia takes 3 years to treat, maybe a little longer if the child is a male? Did you know that every day, all over the country, kids pile into outpatient oncology offices to see doctors and nurse practitioners or to receive chemo or blood transfusions? Or how about the safe "dosage" of any blood product? (It's 15-20mL/kg.)
Those are just a few things I learned and experienced on Friday when I got to leave our clinical floor for an "alternate experience" at the hospital's outpatient pediatric oncology (aka "hemonc") unit ...
For 8 of our clinical hours, I experienced a field of nursing that has always seemed interesting to me. I think it all started a few years ago when my grandfather died after several weeks of fighting in the hospital, after several weeks of our entire family practically living on the oncology floor. I spent my entire spring break and most of my time out-of-classes there with them, and I marveled at the compassion of the nurses and the strength of the other families there. Grandpa died there, and the experience was absolutely excruciating, but the nurses helped us through every step. I've worked enough on different floors as a student and nurse technician to know that I need a floor where I can join other nurses to care and use our hearts every minute of the day. Most floors just aren't like that, but the oncology floor was. And then, I've wanted to work with kids ever since I wanted to be a nurse, but at times I've wondered if I was strong enough because of my past and also because I really think if any nurse would get compassion fatigue, it would definitely be me. I do everything with every single piece of me - I can't help it. I have a problem "leaving it at work," and I take it on as a personal job to make sure every single patient I encounter is treated like the best person in the world with everything I can find to give. But Friday taught me that I really feel I want to go into pediatric oncology.
First thing in the morning, every single day, around 7 or 8 doctors and nurse practitioners and a handful of nurses join a psychologist, social worker, secretary, and child life specialist to discuss the day's planned children and where they are in their treatments, what their latest tests have revealed, what they were coming in for (chemo, consolidation, blood, visit, tests...) etc. It's an amazing 45 minutes where every person is completely in tune to what's going on so they can cater their speciality to the kiddos as best as they can. Knowledge is power, and these meetings really displayed that. The unit just exudes cohesion. Everyone is on the same page.
After the AM meeting, the patients started rolling in. For each new folder we'd see in the "inbox," we'd walk to the waiting room and call the child's name. The nurses all know the kids inside and out, so usually it's more of a, "Hi, Amber, how are you doing? Wow, I love your coat!! How was school this week? How is your new puppy?" Then came vitals, and we'd do a height, weight, BP, and temp on each child before bringing them into a room. After a normal run-down of questions, each child would get a blood test (CBC, CMP, differentials, type and screen) either peripherally or through the ports in their chests. I learned that the "Mediports" are like Hickmans, not Broviacs, and I learned the pros and cons of each. Most of these kids have Mediports, so I handled an extra the nurses keep for an example, and I was able understand the idea of them so much better. They can be challenging to draw blood from, but they make life a little easier for the kids. We had to use a sterile field to draw the blood, and we wore masks so we didn't risk getting any germs into the port since these kids are so immunocompromised.
Anyways, after we had our blood, we would flip the flags above the door to signal the doctor or nurse practitioner that their patient was ready, and then we'd send their vials to the lab to be analyzed. After seeing their practitioner, each child would hang out until their lab results returned. If their counts were low, they would have to stay an extra few hours to get a blood transfusion. If their counts were good, they could go home. Some kids had chemo treatments scheduled for after their office visit, and they would go get started on chemo and sometimes receive blood later on. Oh, and we monitored each kid on a big list the nurses made to make sure everyone has had their flu shot!
Chemo is a crazy thing. To hang it, we had to put special gowns and gloves on, and before we gave it, the kids would often get IV Zofran to prevent nausea and vomiting. The kids and their parents would each get their own room where they could watch TV, play games, watch movies, eat lunch, do whatever they wanted, and there was also a bigger room with a bunch of activities if a child wanted to go play with other kiddos. They would hang out all day until their chemo and blood (and sometimes IVIG) were transfused, and then, exhausted, they'd go home. For some of these kids, this is their routine 3 days a week, for others, 1 time a week.
I'm not sure if all peds outpatient oncology units do this, but at least for here, the doctors work closely with an organization called the Childrens Oncology Group, or COG. COG, from what I understand, is an organization comprised of doctors, nurses, researchers, scientists, etc., and they work on maintaining very, very specific (down to the day) treatments for each kind of cancer, also dependent on the child's age. Their treatment plans are called "roadmaps," and for example, it will say for ____ type of cancer, the child must get ____ kind of chemotherapy on day 35 of treatment. Of course, each child's doctor could modify theirs if they wanted to, but outside of unusual circumstances, they don't. Then, if the child and their family agree to be in the "study," the doctor would continually send in each child's progress on the treatment, samples of tissue if they get any kind of tumor removed, etc. COG takes all of their patients on each of their treatment plans into account and will modify treatments if they "discover" something revolutionary or even just realize something isn't as successful as another option would be. The plans are up-to-date and completely cutting-edge, and it's really amazing how this system works together. One of the nurses told me COG is the reason pediatric patients recover from cancer at a much higher rate than adults. Parents of kids with cancer are desperate to help out other parents, to help progress the study of pediatric cancer so that someday, it won't hit families like it hit theirs. They are in this for their child, and they want to do everything they can to make sure this doesn't happen to any other children ever again.
There were three patients who really made an impact on me during the day. L, R, and N. L was a 10 year old who hadn't been to school in months because of her leukemia-stricken immune system. She was in for blood and chemo, and one thing she was really dreading - 4 injections of a drug called asparaginase. It's a form of chemo that has to be injected, 2 shots in each thigh. To make it as bearable as possible, 4 nurses injected it at the exact same second after counting to three. They're deep shots, but the drug itself is what makes it so painful. L had EMLA cream applied before hand, and she also treated each thigh with ice before the injections. L told me it just stings incredibly bad, and the sensation took awhile to go away. This was her third dose of the "4 shots", and she only had one more left after that. I told her how amazing she did - I would have been bawling! Not her. These kids are strong.
Next, R was in his early-20s (if you begin in pediatrics, you can stay there for your course of treatment) and he was deaf. He was so inquisitive, and using his mom as an interpreter, he asked me several questions since I was a "new face." He kept flipping through a magazine extremely fast, not even reading, barely looking at pictures. I asked his mom if he liked to read, and she said yes, but it's frustrating for him so he doesn't know many of the words. Anytime he got to a word that was new to him, he would stop and look it up and then figure out how to sign it. She said he would spend more time doing that than actually reading the book, so eventually it would frustrate him too bad. I had a few questions about it, and Mom explained something to me that I have never even thought about. People who are born deaf only know the words they have learned how to sign. So if a deaf person tries to read a normal book, it's likely that he or she will not recognize many words. Who signs "thoroughly," "enormous," "periwinkle" or all of the fancy, long adjectives we've put into the English language that are only synonyms for simple words like "very," "huge," or "purple"? That concept was just amazing to me.
Then N. When we called her from the waiting room, I knew I recognized her. She was absolutely beautiful with long, blond hair and pretty eyes. She was with a guy I assumed to be her boyfriend, and the more I saw her, the more I tried to remember how I knew her. Every time my eyes met hers, I recognized the deepness of them and how exhausted, scared, and just how world-turned-upside-down she was. She seemed so accustomed to her terrible routine, keenly aware it wasn't what other girls her age were used to. She seemed like each visit to this office was just as hard as the first. My heart felt hers, and it was so sad. When the nurse was confirming her current medications, I was surprised to realize her "list" was similar to the portion of my "list" that falls under my car wreck pain and fibromyalgia. Gabapentin. Percocet. A few others. Then I learned she was coming in because she was experiencing pain in a new area. Cancer patients are in significant pain, sometimes the worst of all.
Once we left the room, I asked the nurse what N had - I deducted that she was in pain, but there were no chemo meds, and her hair was long and perfect. So apparently, she's terminal, but she's had cancer for several years now. I guess they're not actively treating it at the moment or something, but her prognosis isn't good. Then the nurse told me a story that made me realize why I recognized N's face. A few years ago, her picture was all over the local news and MSNBC for getting a wish from Make A Wish that was quite different yet so heartwarming. N was in love with the guy she knew she wanted to spend forever with, yet her time could run out at any moment. She wanted to marry him, but she knew she would fall off of her parent's insurance, making her unable to get treatment. So it was love or healthcare coverage. Make A Wish decided she shouldn't have to choose between those two things, so they granted her wish of wanting a "commitment ceremony." Instead of a traditional wedding and marriage license and losing her healthcare coverage, they had a formal ceremony with a minister, and he moved in with her and her mother. Make A Wish paid for the wedding, reception, and honeymoon.
It broke my heart to remember the story I'd long forgotten about because N was in the same situation as Jonathan and I are in... marriage or health insurance. It's a terrible, awful thing what kids like us have to deal with, to choose between. Crazy world.
So for the entire day, I worked closely with the nurses, spent time with the patients, brushed up my IV connections/machine/hanging skills (since I haven't gotten any practice with the patients I've had this semester) and just really took so many things in during my day. I wasn't ever bored, and I really enjoyed the pace. It got busy at times, but not stressful-busy. I felt like I belonged. I even ate lunch with the nurse practitioners and asked them the paths each of them took to get to the jobs they have now. You can learn so much from successful nurses who have been in their fields for awhile.
You won't though, learn as much as you'll learn from the patients, from the precious kiddos who are fighting something most adults can't even find the strength to get through. Yes, this floor could be hard at times, but on the other hand? The kids - each and every one of them - are so full of hope and strength. There's an amazing air of hope on the unit, even in the rooms of the kids you know aren't going to make it. We had one teen who was literally at the edge of death, yet enormous efforts were still going on to fight the cancer we could, and of course, to make him as comfortable as possible. What if one dose of chemo, a few units of blood, could give him just one more day with his family and his friends? Would it be worth it? We believe it would be. And so that's how it goes. Then the kids who are just starting, in the middle of, or wrapping up their chemo? There's so much hope. Hope that this is working. Hope that the cancer is going away with every new treatment. Hope that all this fighting is going for something. Hope that the family will get through this. Hope that this is just a really hard time but it will end soon. Hope that tomorrow will be just a tiny bit better.
It's a good floor. A good field. The best nurses I've ever talked with, and the best, most courageous families.
Friday changed my life, and I loved it. Absolutely loved it.
So Friday was yet another day of our pediatric clinical, and we finally got to move to the "little kids" unit. I liked the "big kids" unit, but as you'll know from my stories, I have not been having the best experiences there. I was welcoming the new unit because of the larger number of beds and change of scenery. It felt a little weird leaving the nurses and techs that we had finally really gotten to know (on the other unit), but the new unit also meant that peds is almost over (already?!) so no one was complaining! (1 rotation closer to RN!)
Nicole (Jonathan's sister) had the stomach flu so I stayed at my house Thursday night instead of hers like I usually do since she lives closer to my clinical site. I was a little nervous about how bad the drive would be from my house, but surprisingly enough, I made it without any morning traffic at all. I'm pretty much convinced that nurses miss morning rush hour because getting in at 7am is earlier than most people work. Our instructor lets us get there at 7:30, but I aim for around 7:15 so I think I still miss any trace of rush hour. The worst thing yesterday was that it was pitch black outside, and it was raining - not a drizzle, more like a torrential downpour. I only hate driving in two conditions, and those are: driving in fresh snow (the kind that makes your tires make that grinding noise) and in dark, heavy rain. But I eventually made it in probably about an hour, parked in the new massive parking deck, and chanted "6 seashell" to myself the entire way in so this week I wouldn't forget what floor and row my car was parked in. I learned the other week that playing Marco Polo in a huge parking garage with a car alarm button is not fun!
First news of the morning, our instructor let us know that no longer were the two units separated by age range but now, seeing how we are in H1N1 flu season, level of infection. And this apparently was now the infectious floor. By the end of the day, I doubted that to be true since both floors had a few infectious kids (not just H1N1 though... other illnesses as well) and this new unit most definitely had our younger kiddos. So thankfully, we weren't all in rooms full of communicable diseases. (And anyways, why would you make the little kids' unit the infectious unit? Wouldn't you rather chance it with the teenagers and kids with immune systems larger than the few-month-old babies? Just a thought...)
My patient was C, an almost-2-year-old with "2 infectious abscesses," being the only thing we knew about her. Umm, great. I just had a girl with staph on a tiny cut on her foot the other week, and it was b-o-o-o-o-r-r-r-i-n-g. I went to review C's chart, and it looked like one was lanced in the ER, the other broke open on its own, and both had tested positive for many gram+ bacteria with staph. Super. I perused a few notes before going in for vitals and assessment, and it looked like she had been in several times before for these. There was a note saying the parents had vocalized concern about cleanliness, and there was an order for an infectious disease consult to get to the bottom of their problem and find out how their home/living spaces would be so infested by staph that their baby would keep getting infected cuts.
Eww.
I went to go to the room and a resident stopped me in the hall, "Are you Amanda?" I have not one, but two name tags that say it... "Yes." "Great. Get some formula for your patient." Please? Definitely not. I hate bossy barely-doctors who think student nurses and all other nurses are at various levels of stupid. Most of the doctors aren't like that, but this one definitely was. I told her I would and went in to ask Mom what they had C on. I opened the door and about died from the smell of grunge and a whole bunch of possessions that smelled like cigarette smoke. The lights were off and Mom greeted me, quite agitated. "Are you serious? They won't leave us alone. We're just trying to sleep." I explained how I was coming to get a bottle for C and that I needed vitals and an assessment and then they could rest for as long as they wanted. That wasn't good enough for her, but it was how things had to be. 2% milk, vitals, and a nearly-impossible-to-get assessment later (in and out of fussing and kicking and swinging her arms any time I touched her... that's always fun) I was done. Since I felt so unwelcome in the dark room in which I was only allowed to whisper, I was pretty glad to get outside. C seemed, overall, very healthy. No fever (well, not like I could get an accurate temperature on her, but she felt afebrile to me), no pain, and one sore was healed over while the other had just a tiny amount of sanguineous exudate, to which I documented with pride, mostly astonished I could remember that word from 2 years ago. I charted and filled the RN in on my findings. We discussed C and her family, and she informed me how she expected them to be discharged by noon. I feared another boring day.
I walked down the hall to see what my friends were up to. M had a little guy, 7 months old, named D. He'd been in the hospital for two entire months and had no parents to speak of. The nurses said Mom has only come a couple of times, and when she does, she's high. Dad has only come a few times as well, and he apparently just sits on the couch in the room and text messages in the dark. Maybe tiny D was better off without them. At any given minute, he had a handful of nurses in his room playing with him, talking to him, or helping him develop with various visually-stimulating toys. He'd been there so long, they were the only family he had who actually loved him enough to are about his well-being and growth. D was hooked up to every tube imaginable - IV, central line, catheter, NG tube... probably another one or two I'm missing... and he had just come out of surgery the day before to reverse an ostomy. Developmentally, he's spending some of the most vital months of his life in the hospital, and who knows how much longer he'll stay. When and if he leaves, will he go home with his parents? What kind of life will they give him? We all tried not to think about it. Afterall, D's problems only began in the first place because they let him get dehydrated for too long. One thing led to another and he ended up in this terrible condition. His nurse said he was just then starting to look better. He was the sweetest little guy, and my friend who had him pretty much spent the whole day working on his medications alone. He had so many going into him, it was pathetic. Over the course of the day, I helped a lot with him. I didn't have much else to do and M needed some extra help, so it worked out. Little D liked to be talked to, and he was so content when I'd gently stroke his forehead. Plus, he needed someone there to put his pacifier back into his mouth each time he'd spit it out or otherwise, much crying would ensue. It was so sad how helpless he was.
I walked past C's room again, and the lights were still off. I decided to fill out my care plan assignment before I went in to check on them again... Lights still off. I peeked in, and C smiled at me. She was in her crib walking around while Mom and Dad were sleeping on the pull-out couch. I smiled at her and waved, not wanting to turn on a light or make too much noise. I decided these parents might be better left asleep. I actually left them that way until I knew it was almost time for them to be discharged. Between that moment and discharge, there was a little more drama that entailed, but nothing other than what made me think these parents really had no idea what was best for their daughter and sadly, were probably too young to even know what was best for anyone really. I hoped and prayed they'd even fill her antibiotic prescription - trying hard not to judge - and I made sure to go over the discharge instructions very carefully with extra emphasis on taking the antibiotic for the entire length of treatment and setting up their referral appointment with Infectious Disease. Mom put on C's dingy pink coat, and I walked them to the doors. I wished them well and waved at C who seemed to think I was great now that I wasn't taking her blood pressure, palpating her abdomen, or trying to hold a thermometer under her arm. I wondered if these parents knew the huge responsibility they had. I wondered if they'd ever realize that they were the only two people in the world who could give C a healthier, happier life.
I walked slowly back to the elevators which I took back to the floor. I was afraid of whether or not I'd get a new patient. I hoped so. And please let it be someone with something good!! We were waiting on 2 admits, and there were a couple patients on the floor who hadn't been assigned to a student. My instructor told me to go to lunch and then see what she could come up with. By the time my 1/2 hour lunch was up, the admits weren't there yet (and no one even knew how long it'd be) so my instructor gave me a 1 year old in for biliary atresia.
I read A's chart and researched biliary atresia online. I hadn't read much about it before, and I learned that biliary atresia is a disease that occurs in infancy in which the bile ducts from the liver to the gallbladder block off. All of the bile accumulates in the liver until it quickly causes enough scarring and damage to inflict cirrhosis and require a transplant. Baby A had a complicated procedure called a Kasai procedure which can sometimes reverse the condition at least for awhile, but it wasn't successful. Sadly, after receiving a liver transplant exactly a month ago from a deceased 2 year old donor, A was past mild rejection and into moderate rejection. You wouldn't know it by looking at her, but A's prognosis wasn't good. She was active, happy, and smart, albeit again, a little developmentally delayed due to her infancy spent being always sick and often in the hospital. A side effect of her disease is an increased metabolism which makes it hard for an infant to gain the weight she needs, so she was significantly small for a 12 month old. The nurse told me how important it was to be persistant on giving her bottles (she took special double-calorie formula) because A's mom just somehow didn't understand how important it was for her to have them as often as she would take them. I tried to explain it to Mom, but I don't think I got anywhere. Again, I tried so hard not to judge, and I know we as nurses try not to all the time, but each time I went in or walked by, A's mom was talking on her cell phone, sometimes with A's crib rails down, not even paying attention to her daughter. Each time I saw that, I'd walk in, raise the crib rail, and sometimes get her to take some more of her bottle. It seemed Mom watched Jerry Springer all afternoon, and I really think she cared more about "who was the baby's daddy" on the television than what her own daughter was doing right there in the crib. Sometimes you really have to wonder where these people are missing it and what - if anything - you can do to help them understand...
So I spent the afternoon with my baby, A, with M's baby, D, and with my other friend's baby S. S, probably about 1.5 years old, had the curliest hair, the biggest smile, and the yellowest, jaundice eyes you'll ever see. Our little yellow baby had Alagille Syndrome, a genetically dominant disease which she inherited from her mom. The disease can affect the heart and liver to the point of requiring transplants, and it also can injure kidneys, impact bone development, and harm other systems as well. It comes with prominent facial features such as an enlarged forehead, and of course the yellow eyes and skin from its effects on the liver. Baby S came from some type of rehab home with an infection and was waiting to get well enough to go back there. Mom apparently didn't come in to see S much, possibly because she was busy with other children at home or maybe since she herself was sick with Alagille Syndrome. Mom, waiting for a liver transplant (as a result of her disease process) was several months pregnant with another baby (who could possibly have Allagile Syndrome as well), and that in itself is extremely dangerous. My friend who was assigned to S was having trouble finishing her clinical papers since S was so restless and fussy lying in her crib, so I came in to see if I could help. I quickly found that S just wanted to be loved, but I really think that's the case with all of these kids. And so, I gathered up all 4 or 5 of her various tubes, maneuvered them out of the way, and sat down with her in the rocking chair. We watched Baby Einstein as she calmed down in my arms, as I told her - albeit unsurely - that everything was going to be okay.
Friday was a particularly heavy day.
With C, D, and S, I really questioned the idea of judging and wondered at what point does a nurse's thoughts cross that line? What really makes a parent a good parent, and what determines whether or not parents love their daughter or son? If parents give their child a dirty home, do they love the child any less? Does that make them irresponsible, ignorant, or maybe just uneducated? If parents let their infant get dehydrated, are they bad parents? It's easy to assume they are, but what if they didn't have money to buy formula? Are they irresponsible for being too prideful to ask for help? Or did they ask for help, unsuccessfully? Should an assumption be made, based upon age and skin color, that the formula money was spent on drugs or alcohol? When are parents careless to conceive another child when he or she has a high chance of having a fatal disease? When is a mother foolish to carry a child that might cost her life when she has other children to live for? It's easy to assume she knew the risks, but what if she didn't? Or what if religion was what made her decide against contraception? Or did contraception fail? Science can fail, just as wise people can make dumb decisions or just as we can label someone as anything we want, only to find out we didn't even begin to know the facts. So is the mother in question a bad mother for being true to her faith? When is judging inappropriate? Is it ever appropriate? When are the thoughts we think indications gauging neglectful parenting or simply matters of opinions reflecting our own ideals and values? When are our judging thoughts examples of the deductions we have been carefully trained to make, proof of the critical thinking we have been carefully trained to use? When are we crossing a line, and when are we helping, educating, and influencing? When are we assuming, and when are we knowing? What is judging, and what is intuition?
The older I get, the more life I live, the more I realize that rare are the questions that do have answers.
I am 22 & currently spend my days nannying my itty bitties + going to college (working on my nursing degree, goal: pediatric oncology) & am honored to be a published writer in a nursing anthology & a contributor to many scrapbooking publications. i love hanging with my amazing friends, sister & family. i love my baby puppy haylie brooke and our silly doggie ri-ri. in my rare spare time, i read & get crafty. i thrive on organization, my mac repertoire, learning & absolute fabulosity. my favorite place in the world is paris. my favorite color is pink. i love being a nurse & i believe each one of my patients is precious. i'm a night owl & wish my lifestyle promoted such habits. i like lazy jammie days. i believe in god and am thankful for his hand on my life. i believe that life is too short to be anything but happy, & i’m thankful that a chronic liver disease + the effects of a car accident have taught me important values that most people learn far too late. i hope that the world will find hope, and my idea of a good day is one in which i made someone smile :)
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Do you all remember my little 
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Sooooo we get up to the big jolly man who must have been the real Santa because he was just perfect. He was so nice and tried to calm L Bug, but to no avail. She held onto every side or piece of the stroller she could, screaming and kicking. Meanwhile, one of Santa's helpers had given Baby Bug to Santa, and she was having a blast just sitting on his lap playing with her fingers and making faces. "See, your sister is having fun with Santa. I bet she told him what she wants for Christmas. How will Santa know what to get you if you don't tell him?" Skip ahead like 10 minutes and I finally get the kid out of the stroller, into my arms, digging herself into me, "NOOOOO SANNNNNTAAAAA!!!" Hoping I'm not traumatizing her for a lifetime of fearing Santa like some kids fear clowns, I sat down next to Santa and told him what I wanted for Christmas. He then asked L Bug what she wanted. She played shy and just looked at him. "A dolly?" "You love baby dolls, L Bug!!" Her eyes got big. Still red and wet, but big. Then Santa's helpers said they were going to take the picture. 1-2-3, L Bug was ready to bolt as soon as the shutter went down. Santa gave her a lollipop and said to have a MERRY CHRISTMAS!! L Bug did not want the lollipop and did not wave bye-bye to Santa. I did.
Yesterday I was dreaming on the highway. It was around 6:30am and I envisioned myself side-swiping the truck next to me. When I got home about 12 hours later, I realized it wasn't a dream. Go look at my car if you don't believe me.
First thing in the morning, every single day, around 7 or 8 doctors and nurse practitioners and a handful of nurses join a psychologist, social worker, secretary, and child life specialist to discuss the day's planned children and where they are in their treatments, what their latest tests have revealed, what they were coming in for (chemo, consolidation, blood, visit, tests...) etc. It's an 
