Happy Ayyam'i'Ha!

This week, our family celebrates Ayyam'i'Ha ("Days of Joy").  This is a special holiday in our religion, the Baha'i Faith.  Each Baha'i family celebrates a little differently, though most include elements of service & charity, parties, and gifts.  Our family celebrates by decorating our home with ribbons and stars, sharing gifts, and being of service to those around us.  This year we made small gifts for Malcolm's classmates, cookies for his teachers and our co-workers, and volunteering to help with the community's party.  Malcolm's teachers also decorated his classroom!

My favorite part of Ayyam'i'Ha this year, so far, has been seeing Malcolm's joy in the holiday.  Despite being able to say both "Happy" and "Ayyam'i'Ha" with ease, when he puts them together, they come out a little funny . . . 

Internship: Reflections Week Eight

So, this is pretty much the halfway point.  This week I finished my rotation in hematology/oncology, and next week I'll start in the Pediatric Intensive Care Unit (PICU) at the other children's hospital.  So I'll go from really knowing where I'm going and what I'm doing, to once again being a very small fish in a very big sea.  But I'm okay with that.  Just think where I'll be in another two months!

My last week in hem/onc was full of amazing everything.  I functioned mostly solo on the floor, with my mentor only coming along once in a while, mostly to either watch me in action, or to meet families who I'd be transferring to her care.  Yes, that means that there were a small handful of families on our floor who had worked only (or nearly only) with just me!  Saying good-bye to staff and patients was tough.  Being on a chronic floor, I have some kids who've been there nearly as long as I have, and I've built quite a relationship with them.  It's tough leaving, and knowing I won't be there to see them thru the course of their treatment, even though I know they're in good hands.  Thankfully, my mentor has offered to send me  e-mail updates, to let me know how things work out for them.  I even had one family give me a picture with a sweet message written on the back.  I'll miss them!  I was pleasantly surprised by how many hugs I received from nurses, social workers, and chaplains on our floor.  I'll miss them, too!

This week included lots of therapeutic play sessions, some procedural support (I finally got to see stitches!), prepping a teenager for the OR, and one afternoon I even ran the entire floor completely alone -- the rest of the team had a meeting off campus, so I was really and truly on my own!  (Okay, I had a back up specialist on a different floor I could page if I needed help, but I didn't!)

My two big stories from the week I'll save until last, as they are my High and Low.  But before I get to those, I should tell you about my End-of-Rotation-Evaluation.  This is a pretty big deal.  I meet with my mentor and the program coordinator and they give me a 10 page evaluation, covering everything you could think of, and 20 subjects more!  They grade me on each of the competencies (separated by knowledge and skill - think "theory" vs. "practice"), my team membership skills, infection control, hospital policy, timeliness, assignments, preparation, adaptability, etc, etc.  There's WAY too much to list.  Let is suffice to say it's extremely thorough!  All in all, I did pretty well.  Most of knowledge and skills are right on track, exactly where I should be at this stage.  I need more work on my therapeutic interventions (an assessment I completely agree with!).  This skill set really just clicked for me only two weeks ago, so my momentum here is just getting going.  Looking forward to more growth in this area.

I managed to get high marks for my "culturally sensitive care," meaning my ability to work with all kinds of family without being judgmental, and to demonstrate knowledge and consideration for various cultural practices.  I felt pretty pleased to be recognized for this, since it's something I've spent years working on.  I also managed to get high marks from both my mentor and the coordinator for being able to take tough criticism and learn from it.  I really appreciated hearing that feedback, too, as that's been one of the tougher things this rotation.  There have been a few times where one or both of them have given me feedback that was really hard to hear, for one reason or another, and I really struggled with it a few times.  I have been asked to change not only how I do some things, but also how I speak, how I think, and how I feel.  Please, take a moment to really think about what that means, and you'll realize just how hard a thing they asked of me.  So to be told later that I amazed them both with my ability to do this . . . well, I'm glad my efforts were appreciated.  'Cuz they sure as hell weren't easy!

The coordinator, who the interns spend every friday afternoon with, has a teaching style that is very different than anything I've encountered before.  She tends to challenge just about everything we say, pushing us to really question and justify every view we hold, personal and professional, and she's not gentle about it either.  After the first week with her, I ran home crying and miserable, not sure if I could stand to go back.  But then I remembered what she said at orientation about her teaching style, and I remembered thinking to myself that her style was going to push every button I had, and that it would be really hard for me to get past that.  So . . .  after that first meeting with her, I had to make a choice -- either Duck'n'Cover, never sharing my opinions again . . . . or Get Over It.  I chose to get over it.  And I'm really glad I did.  It wasn't easy, but it was worth it.  I learned a ton from her, and now Friday afternoons with her are going to be thing I miss most at my second rotation.

Okay, enough introspection, on to Highs and Lows.  I'll start with my Low, so that we can end on a high note.

My Low:  I had my first bereavement this week.  That's one of those hospital euphemisms that means someone died.  This patient has been on complete life support for a little while, and the family chose to de-escalate care.  That's another one of those hospital euphemisms - it means turning off life support.  Remember a few weeks ago, when I told you about going to that workshop and learning about doing hand-molds?  Well, I put that skill set to work.  We made a mold of the child's hand, and ink prints of hand and foot.  I did the foot, and am grateful to say that I got it right on the first try.  The whole situation was so sad, and hard.  I'm grateful that there is a service we can offer to bring comfort to the family.  I made it through without crying, and in fact was coping pretty well.  Then a helpful staff member told me, "You'll get to do this a lot more during your PICU rotation."  I told her, "I'm not thinking about that this week."

My High:  I have a patient I absolutely adore, who I've been working with for several weeks.  He has refused every single activity I have offered, including over a dozen different therapeutics I planned for him!  Even his family joined in on the running joke, and would ask me what I had brought today for him to say No to.  A successful therapeutic with this patient . . . my seemingly unachievable goal.  Until this week.

He loves cars.  He has about 400 Hotwheels on his hospital bed at any given time.  (And, no, that really is not an exaggeration!)  So I walk in, with a bag hidden behind me, and I say "Hi."

He says "I don't want to."  (Sigh.)

I tell him "you are never going to believe what I found today when I was going thru the toy cupboard."

Him:  Is it a Hotwheel?

Me:  Actually, yes!

And I pull out from my bag a shiny new Hotwheel, with a marker taped to it's back bumper.  His looks at the desecrated Hotwheel, then at me in confusion.  I hand it to him, pulling the cap off the marker, and slide a piece of paper under it.  He starts driving the Hotwheel across the paper, and it leaves a trail of ink behind!  His eyes grow big and round, "Ohmigosh!  Ohmigosh!" he declares, a smile erupting across his face.  He drove that car around for the next five minutes, then set it down.  "I'm done."

I smiled and asked, "do you want another color?"

"Yes!"  (I think this is the first time I have ever heard him say this word.)  I pull from my bag another Hotwheel, with a different colored marker taped to the back.  He drove that one around for a while, then the third one from my bag as well.  After that, I offered him two more Hotwheels, no markers attached, and a paper plate with some paint on it.  The idea being to drive the car thru the paint, then drive it across the paper.  Well, turns out that horrible idea is just about sacrilege.  One does not get Hotwheels dirty!  So, at his prompting, we threw the paint in the garbage and taped markers to those two cars.  Then three more which he sent me to fetch, along with more paper.

Notice the language I use there, please.  "He sent me . . . "  You might be thinking to yourself "it's a fun art activity, creative, but I don't get the therapeutic aspect."  No problem, it's kinda subtle.  One of the biggest challenges that most kids face in the hospital is Loss of Control.  This can not only frustration them, but undermine all their coping skills.  An array of doctors and nurses poke and prod, dictate thier diet, want them to pee in a cup, force them to submit to various treatments and exams . . . it's a lot to cope with.  When I walk into a room, I'm one of the only people that a patient can say No to.  It's a powerful thing.  That's why I didn't mind all the time this patient told me No.  Every time he did, he got something out of it.  He got a little control back.  The car-markers game gave him a lot of control back.  He controls what cars he drives, which markers we tape to it, whether or not cars get driven thru paint, and can "send me to fetch" more cars and paper.  Suddenly, he's in control.

Guess what else?  He's smiling, too.  That's a pretty rare sight.  Turns out that a bit later, when his doc came to do his exam, he didn't mind it a bit.  That afternoon, he followed the nurses instructions, without protest.  That's a pleasant change, too.  Pretty cool, huh?

Internship: Reflections Week Seven

This has been the week of Stepping Up, and Stepping Out!

Stepping Up:  as in "step right up, don't be shy!"  By mid-week I had lost count of the times my mentor sent me out on the floor alone.  I tried my hand at a few new skills, and grew my skills in others.  I'm checked off (meaning I can go out alone) on two more competencies (Procedural/Pre-Op Preparation, and Diagnosis Teaching.)  This makes officially, half my competencies!  Here's a peek at a few things I did this week . . . 

I prepared a very anxious 7 year old for a Picc line placement (this is the "big brother" to an IV -- a very thin tube goes from the elbow, up the vein, to near your heart.  It serves the same purpose as an IV, but lasts a lot longer -- weeks instead of days.)  Once I explained it all to her, in terms appropriate to her age and understanding, I then stayed with her for the procedure, which took about 45 minutes, providing ample and creative distraction.  It took everything from "I Spy" books, to flashing lights, to blowing whistles (to "blow away the pain") to making up silly songs to keep her distracted during the procedure.  Distraction for a procedure like this is very important for children.  An undistracted child often fights the staff, pulls their arm away, tries to escape, throws tantrums, throws up . . . . Even if they hold still, the stress of fear and crying will constrict the veins, making it that much harder to find a vein with the needle, and thread the tube.

I had a major breakthrough in my therapeutics skills.  In some ways, therapeutics are the toughest of the competencies to learn.  Prepping, support, diagnosis teaching . . . these are all pretty straight forward.  But therapeutic interventions come in so many varieties and flavors, that knowing what kind of therapeutic a patient needs, let alone picking out a specific one, can be an overwhelming and daunting task.  This week, my mentor really pushed me to figure this out on my own (always providing a safety net so I didn't screw up a patient's care with a bad choice).  Turns out, that when I have to do it on my own . . . I'm perfectly capable!

For example, I had a nurse ask me for help with a specific patient, citing a need for "help with his coping skills."  Well, that's pretty vague. . . This is only his second hospital stay, so does he need . . . 

* An "environmental familiarization" therapeutic, like a hospital scavenger hunt to get to know all the parts of the hospital?  Or making some wall decorations for his room to make it more "homey"? Or an "all about me" collage for his door to help the staff get to know him?

* Or maybe he's overwhelmed and frightened by all the strange equipment and routines at the hospital?  We could do some therapeutic medical play, and have him use a doctor's kit to perform an exam on his stuffed animal?  Or maybe he'd feel empowered to give the doll an IV?

* Maybe he's confused about why he's here?  Should we do a body-outline drawing and see how he decorates it?  Does he know where his tumor is?

* Maybe he's upset because his hair is falling out?  Should I do something to work on his self-esteem?

* Maybe he needs help with pain management?  Should we do a stress glove?  Or some guided imagery? Or some breathing techniques?

* It could be he's missing his friends from home.  We could make a video to send them, and ask them to do the same.

Well, you get the idea.  I could write another 50 pages and still not hit all the possibilities.  When it comes to choosing a therapeutic activity, there is no right answer.  Heck, there's rarely only one right category!  In the end, I spent some time with him, and discovered that pain management would be a good place to start.  So we put some play-doh into a surgical glove, tied it shut, and then squeezed and squeezed.  By the time we finished, he was completely distracted from his pain, and in a cheerful mood.  We talked about how squeezing the glove helped him cope, and asked his family and nurses to help him to remember to use the stress-glove when he was hurting or sad.  The next morning, I returned with a variety of whistles, and we practiced deep breathing and blowing the whistles, again talking about how these things could help him feel better when he's sad or hurting.

This week, I also had the amazing experience of working with the 3 year old sibling of a bone-marrow-transplant patient.  The 3 year old will be a bone marrow donor for her little sister.  After much planning and thinking, I choose to approach my session with her from a medical play standpoint.  There's no method to meaningfully teach a young three year old about leukemia, bone marrow, and blood cells.  But I could certainly help her to become more familiar and comfortable with the equipment she would encounter when donating her bone marrow.  So we played with a doctor's kit, all real equipment, which she tried out on her mom, and we  practiced drinking from a medicine cup (like she would on donation-day) -- she loved that part! -- and I gave her an anesthesia mask to take home and play with over the next week.  While we played, we talked about her little sister, and why she was in the hospital.  The 3 year old loves being a big sister, and sharing her toys.  So we talked about how her sister's blood was sick.  And that she could share some of her blood to help her sister get better.  That went over pretty well.

So, remember how I said this was a week of "stepping up and stepping out?"  Well, here's the stepping out part  . . .  as in, "stepping outside the usual routine."  I'm nearing the end of my first rotation, and by now have a pretty good feel for what "normal" is for a Child Life Specialist working with a chronic population.  But, of course, not every experience falls in the "normal" category.  This week I met a patient that fell well, well, outside the realm of the "typical" for our floor.  The patient had some challenging behavior patterns.  By that I mean:  in the course of a 10 minute tantrum, my mentor got punched, the nurse got kicked between the legs, and I got bit.  Yes, bit.  (Didn't break skin, thankfully!)  We're all sporting a rainbow of bruises from hits and pinches.  (And no, this was not in response to a painful procedure!)  Later that day, one of the wonderful doctor's on the Pysch staff taught me how to do a "basket hold" which would allow me to control arms and legs without getting bit.  It's really a brilliant move!  That being said -- it is never Child Life's job to hold a patient!  Physically restraining a patient is way, way, way outside of what we do, and very counter-productive to the rapport we're trying to build, and our role as the "safe" person in the hospital.  So, hopefully I'll never need to use the basket-hold on a patient, but sometimes reality hits you in the face (or bites you, or kicks you) and you need to "step out" from your norm.

My high this week:  feeling like I've got a handle on selecting and implementing therapeutics.

My low:  one of my favorite nurses got chewed out by a stressed-out parent.  She didn't deserve it, not in any way-shape-or-form!  The nurse took it really hard.  She's one of the best nurses on the floor, and I'm heartened to see the whole team rallying around her with love and support.

Internship: Reflections Week Six

This was a week of really high Highs, and really low Lows.  Let me warn you upfront -- this post will contain some heavy, sad stuff.  It will also be relatively short -- lots happened this week, but because of HIPPA (privacy) laws, I can only share some general thoughts.  So here it is:  The Good, The Bad, and the Insight.

The Good:  Every Child Life Specialist has their own "style."  I've written about this in weeks past, as I enjoyed the opportunity to shadow other CLS and see their way of doing things.  I've spent the last 5 weeks working to gain a new skill set.  This week, enough of the pieces clicked into place that I am starting to get that first glimpse, that enticing glimmer, of what my style will be.  That tells me that I'm getting skilled enough in the basics of what I'm doing, that I can start to work on how I'm doing it.  That's pretty exciting!

For those at home keeping track:  this week I was "checked off" on introducing services.  That's my second competency I'm cleared to perform on my own without supervision now (the first was Normalization.)  My skills in rapport building are growing daily, with big successes this week working with parents, teens, and kids with delays.  I performed "Medical Play" for the first time -- the patient gets to be the doctor, and I have a giant doll that we give an exam, complete with real needles.  This is a wonderful way to help children become more comfortable in medical settings, and to cope with "needle phobia," which is very normal in kids!

The Bad:  This week, though a combination of speaking with other specialists, and observing families first hand, I realized just how prevalent "non-compliance" is.  Whether it's parents not giving children their medicine at home, or not bringing them in when they're sick, or kids with diabetes not testing their blood sugar and taking their insulin, or kids with Chrone's not following their diet . . .  there are thousands of ways for children and families to fail to follow the medical instructions they are given  . . . .  and a thousand consequences to that choice.  It's one thing when an adult makes an informed choice in disagreement with their doctor's advice . . . it's quite a different matter when kids end up in the hospital, the emergency room, the intensive care unit, because their parents chose for them.  Sometimes those choices make the kids really sick.  Sometimes, it kills them.

This is a whole different kind of grief then I have ever experienced before.  It's grief filled not just with sadness, and loss, but with anger, rage, frustration, and the sick, sick feeling of knowing that it didn't have to be this way.  That it shouldn't be this way.

The Insight:  Here's what it comes down to.  All parents love their children.  They may parent their children very differently then I would, they may make different choices for their children . . . they may make very bad choices, ones that hurt or even kill their child . . . but that doesn't mean they love their kids any less than I love Malcolm.  For me, loving Malcolm means taking him to the doctor when he's sick, and following their instructions.  For other parents, loving their child might mean that they don't take them to the hospital when they know they should, because their child hates being in the hospital and is miserable there.  Whether they're making good or bad (or anywhere in between) decisions, they are making them out of love.  

Every parent loves their child.

Please keep my oncology patients in your thoughts and prayers . . . some of them are hanging on by the thinnest of threads right now.

Photo Phlashback: Christmas in Buffalo Edition

Here are some fun pictures from Christmas, just past, that I haven't had a chance to post yet.  We spent the holidays with Matthew's family in Buffalo.  Malcolm really enjoyed playing with his uncles, grandparents, great aunts and uncles, and cousins (well, Matthew's cousins, so that would make them "once removed"? Or "second cousins"?  Hmm . . . "

(Of all the folks we saw, Malcolm spent more time with Grandma and his Uncle Michael than anyone else, which makes me especially sad that somehow I didn't end up with any pictures of Malcolm with them.  You know I'll remedy that next visit!)  Meanwhile, here are some great family shots . . . 

Malcolm with Aunt Chris (and the Big Bird finger puppet):

Malcolm learning to play hockey with Aunt Pam:

Sharing a few laughs with Aunt Ann:

Snuggling with Grandpa:

Playing with Uncle David:

Internship: Reflections Week Five

So, here it is Sunday evening, and I'm finally getting a chance to sit down at my computer.  This past week was a gold-star-week for me at work!

Monday, my mentor sent me out on the floor alone for the first time.  Just to see a few kids for small things, nothing major, but it felt pretty good to walk down that hall alone, and know that I was ready to go into patients' rooms without supervision.  

This week, I also witnessed a Bone Marrow Harvest!  That was an amazing experience!  I had to wear the special sterile blue scrubs, and had as close a view as anyone could want.  Reading up on it ahead of time, I thought that if anything I saw this rotation would make me squeamish, that this would be it.  For the harvest, they use a giant needle in the hipbone, push thru the bone with brute strength, and suction marrow out.  Repeat again and again and again.  They had two harvesters working at the same time.  It was first thing in the morning, so I skipped breakfast, and watched from the farthest corner . . . . But it didn't phase me in the slightest!  Once I watched the first syringe worth come out, I started inching in a bit.  One of the ladies gave us a running lecture the whole time, explaining everything, and she kept encouraging me to move up as close as I wanted.  I ended up about 3 feet from the patient, as close as I could get without being in the way.  It was amazing!  A couple hours later, I watched the very same bone marrow be given to the recipient (donor's brother).  Amazing!

This week, I did two "preps" all on my own.  The first was an OR prep -- we had a patient heading to surgery for a procedure there, so I had the job of preparing her for the experience.  I had a book full of pictures of things she would see (holding room, doctors in blue scrubs with masks/hats/etc., the mask that she'd get her "sleepy medicine" thru, the recovery room where she'd wake up, etc.  Describing the process to her, I focused on sensory experiences -- what she'd see, hear, smell, and feel.  Beforehand she told me she was really scared to go to surgery.  After my "prep" she appeared calmer, though admitted to still being a little scared.  Which is so very normal . . . I and told her that, too!

My second "prep" was for an NG tube.  Nearly all our kids end up with one at some point -- the chemo just ruins their appetite.  And most of them get mouth/throat sores from the chemo, too.  Prepping a school-aged kiddo for an NG tube is never fun.  The decision was made quick, so he didn't even have much time to get used to the idea before we were in there explaining the process to him.  Getting an NG tube is a pretty crummy procedure -- it's wildly invasive, horribly uncomfortable, and there's no really good way to distract a kiddo while it's happening.  But, at least I could prepare him, so he would understand what was happening.  I started by showing him a picture of the GI track, and reviewing with him why nutrition is important.  I asked if he knew what an NG tube was, and he did not.  So I showed him one, letting him touch and manipulate the tube, talking about how it was very thin, soft and flexible.  I also showed him the actual tube (still in its sterile packaging) that the nurse would use for his procedure.  I explained that the tube would go from his nose to his tummy, and that the nurses could put special nutritious "milk" in the tube, so that he could get his food without having to eat.

We talked about that for a bit, then I showed him the procedure on a doll, gently threading the tube thru the doll's nose.  Seeing it on the doll, I think, is what really helped him to understand.  We talked a lot about what his "jobs" were.  This is one of the best coping techniques for kids -- give them a job to do, and help them do it!  His jobs were to "hold still" and "swallow."  We talked about what would help him to do that, ie: holding Mommy's hand, drinking soda to help swallow, etc.  He wasn't happy to be getting an NG tube, but at least he wasn't going into it frightened and confused.

Let's see, what else . . . I attended a conference on Bereavement, and what Child Life Specialists can do to help patients and siblings facing a loss.  We talked a lot about "legacy building" and the grief process, different therapeutic things we can do with patients and/or siblings to help them grieve.  One of the frequent services child life offers is making molds of a child's hands or feet.  (And yes, we do this with a patient who is dying, and for patients who have all ready passed on.)  Much to my delight the workshop included hands-on practice and mold-making.  (I sooooo don't want to be doing this for the first time when it really matters!  My first attempt at mold making, and I snapped the thumb off getting it out of the mold!)

I spent one whole day shadowing another Child Life Specialist on a different floor.  This was an amazingly fantastic experience.  Her style is very different than my mentor's, as different as Yo-Yo Ma compared to Bruce Springsteen.  Both fantastic and what they do, though they do it in very different ways.  Seeing the same things (procedural prep and support, therapeutic play, etc.) done in very different ways really helped to deepen my understanding of Child Life and the skill set I'm trying to build.

My "high" this week:  On friday morning, I arrived at work early.  Walking past the nurses' station to put my lunch in the fridge, one of the nurses flagged me down, saying "Oh good!  Child Life!  I have a new patient is room such-and-such, and he's getting a port today.  I explained it a bit, but he seemed pretty scared.  Can you go talk to him?"  That felt amazing!!  To be tapped by a nurse, treated as part of the team, valued for the service we offer, and knowing just what to do to help the patient . . . . well, that felt really good.

My "low":  (and I can't believe I'm putting this on the blog . . . .) So, it's said that every intern does something stupid at some point.  This week was my turn.  Remember that NG tube prep I told you about a couple paragraphs back?  Remember how I did an extra good job and even showed him the actual tube his nurse would use?  Yeah, well . . . when I finished my teaching, I scooped up all the supplies, dropped them in my prep kit and put it back in the office.  Next morning at flash rounds, his nurse jokingly asked me how much the kid had paid me to sneak the tube out of the room.  Fortunately, she had a whole store room full of spares, but I was still pretty embarrassed!

That's it for now.  See you next week, for more stories from the life of an Intern.