A Mother's love

This Valentine's I am remembering Megan and the incredible love she had for her daughter.

When I first met Megan I was extremely skeptical about her ability to care for her newly born daughter Lilly.  Megan, 17 and Todd, her boyfriend, also 17 had just brought Lily home from the hospital for the first time.  They had no home or apartment of their own, so they were "crashing" with friends.  I entered the small apartment just hours after they had been discharged. Four other people were already living in the apartment, which was scantly furnished, yet cluttered and untidy. 

My primary interest was in 4 week old Lily, so I squatted down on the floor to meet Lily, as they had no baby furniture/equipment to put her in.  She was bundled in blankets on the floor, with an oxygen tube taped to her cheek.  Lily had several issues; besides being born with a congenital brain malformation, causing certain parts of her brain not to form, she also was born with a cleft lip and palate.  The combination of the brain malformations and the cleft left her with basically a large whole for a mouth and nose and lopsided eyes which she could not see out of.  All her nutrition was through a feeding tube.  Medically she had severe seizures on a sometimes daily basis, and didn't enjoy being touched and would scream out when being held. 

The reason I was seeing Lily was that she had been given a prognosis of only weeks to live, and I distinctly remember thinking that I hoped, for Megan and Todd's sake this was true.  They were just too overwhelmed.  I left that first night thinking a lot about Megan and Todd, both high school drop outs who had enjoyed playing video games during the day and partying at night. They had unexpectedly become pregnant and decided to do the "right" thing and keep the baby.  Now they were being expected to do something super human, and care for a dying child who had a distorted face and didn't like to be cuddled or touched.

Todd didn't handle it long, and left after about a month at home.  Lily, surprisingly thrived in Megan's care. At my monthly visits, I watched Megan work like a pro, getting the tube feeds ready, administering seizure medications, etc.  Even when she'd been up all night due to Lily's seizures, she spoke to Lily as only a mother could; gently, lovingly, and sweet.  The two of them had moved from one friends apartment to another.  Although different locations their "home" always looked about the same - always other teenagers at my visits, hanging out playing video games, always evidence of fast food meals, cigarettes and alcohol. But also just as consistent was Megan paying attention to Lily, asking about milestones and telling about little victories in Lily's head strength and cognition. I could tell when Megan looked at Lily she only saw beauty and possibility. 

Lily lived just past her 1st birthday.... Her death was tragic, not because she suffered or  had pain as she died, but because over the course of the year, Megan had fallen head over heals in love with Lily.  The immature teenager I first met had been transformed by love to become a wise responsible woman.  Megan embodied the kind of love that "always protects, always trusts, always hopes, always perseveres."  

Night Visitor

Blake's mom had been sick since he was born. She was diagnosed with lung cancer right as he came into the world. She went through very aggressive therapy and unfortunately began having strokes as well. Each stroke seemed to take part of her person-hood. Her husband and parents would work tirelessly to help her regain function to undergo more chemo, and then a new stroke would occur.

When I finally met Blake's mom, she had just had her most debilitating stroke. Unable to communicate reliably, her arms and legs were contracted, so that any sips or bites were hand fed to her. She often had a blank stare leaving me to wonder if she was still in there, but the family was determined to keep her living for Blake, her 4 year old son.

She was at our hospice house for many weeks, her husband with her at night, her mom with her in the day.

This particular night Blake had spent time during the day visiting his mom, and was at home with his grandmother. Ready for their nightly routine Blake's grandmother began looking for him, to have him call the hospice house to say goodnight to his Mom.

"Blake" she called, "time to call your mom", repeating this several minutes before Blake finally reappeared. "Blake" she then scolded, "why didn't you coming when I called, you love calling your mom." Blake grinned and told his grandmother "No", leaving her aghast at his indolence.

He then explained, "I don't need to call tonight, because she came to see me, she told me goodnight and that she loves me"

The grandmother was now quite alarmed, calling the hospice house. Her fears realized as she learned her daughter had indeed died just a bit earlier, the husband having not even had time to call yet.

Another unexplainable moment in the world of Hospice and Palliative Care

Artificial flowers

Walking around work recently I noticed a sudden new addition of plastic flowers in some of the winter lorn gardens. They weren't hard to miss, bright pink and yellow, they were planted in both pots and soil in this one particular area.  I thought to myself it was a bit uncharacteristic of our neatly manicured flower beds. 

Later that day I met one of the pediatric patients I'm caring for. It's always tough to have a young kid with a terminal disease at the hospice house.  I learned however, that this is one incredible kid. He has been able to get up to a wheel chair from time to time and get out of the room.  It was on one of these outings that he crossed paths with the patient in the room next door.  The adult patient, having been pushed outside in her hospital bed, was heard lamenting that she may not be alive to see spring.

With that perfect sweetness that can come from a child, my little patient whispered to his parents, "We should get some flowers for her, so she'll be happy."

Thus, the fake flowers appeared.  I smile at them daily, not just because they are the precursors for spring, but as a reminder of my little patient... though dying himself, he is unselfish enough to think of another's happiness. 

Unforgettable

I had one of those unexplainable moments at work this week.

We had just admitted a little baby. He was born with so many birth defects, that the doctors had told the family there was nothing to be offered.  There were problems with his brain, his eyes, his mouth, his heart, his intestines were even formed on the outside of his body. Once the decision to focus on comfort was made, the breathing tube was removed and he was transferred to our hospice house.

Mom got here 1st with him. She was 20 something and overwhelmed. As I was meeting her and the little boy, I noticed some sudden breathing changes. His color was changing to more blue/grey and I realized the worst; this little baby was dying just minutes after getting here. 

We gently interrupted our process of admission to see if she wanted to hold her son, trying not to be alarming, but letting her know that her son's breathing was slowing and it looked like he was dying.  She cuddled him. I and the nurse hugged her from each side as we sat and cried.  The breathing was a pattern of long 40 sec. pauses with just a short little gasp/gulp in between.  I listened to his heart which had almost stopped, just an occasional out of sync little beat. 

If only his father was here, but he was still enroute. Mom prayed for more time...I prayed for more time, I think all of us were praying for more time. 

And then, something I have never seen.  That baby boy's color began to pink up. I listened again to the heart, confused at the color change, and as I listened that heart beat began again, strong and fast.  Simultaneously the breathing started again, quick and fast. 

Just like that, he was back, living and breathing.  The nurse and I were flabbergasted. She whispered to his mom, "You're son's spirit must be strong, he wasn't ready to go yet."  His mom wept anew, but this time with joy.

A little miracle.  I wish I could say he went on living, or that all those malformations were healed. But in truth his heart was much too weak. Instead, his father arrived a little later. The two of them, mom and dad, spent the next hours holding him and loving him, and then just as before, the breathing changed.  This time though, they were together as a family. They ushered him out of this world together, peacefully.

A Challenge

There's just something about feeding and children that is inseparable.  Or maybe it's feeding and motherhood? Regardless  I had a case recently that's been one of my more challenging ones personally.

Max was born with a brain condition that didn't allow him to interact with others.  He was blind and deaf, so as you may imagine, touch was not a comforting thing, but an intrusion to his dark silent world. The part of his brain that thinks, remembers, or feels was not formed.  Basically he was living, but not experiencing. 

Max's mom did an amazing job raising him. He ate and slept and cried.  He never smiled and always screamed when being held. He never spoke and his eyes were always closed. His little body grew until one day at age 3 he quit being able to eat.

His mother took him to a children's hospital where test after test was run to determine why max couldn't swallow anymore.  The doctors finally told her, "his body has just outgrown his little brain."  The choice was now hers, should she have the doctors put in a feeding tube or let him live out the rest of his natural life as he was able without medical intervention?

Bravely she decided not to intervene with his disease course.  So he came into our hospice care for the last weeks of his life.

Everyday when I visited Max I had to do a lot of internal work. Emotionally I'd see a little child with an otherwise healthy body asleep, with little thin arms and a dry little mouth. A part within me said "FEED THIS CHILD" and I'd have the urge to find a bottle and at least try to let him eat.  I'd watch his heart beat through his shirt and smooth his hair and pray that we weren't causing him pain.  Logically I'd have to tell myself over and over again that even the smallest amount of milk would cause him to choke and cough and have more discomfort.  I also had to force myself to remember his condition.  This wasn't my daughter that I was starving to death, this was a little boy who had lived his life in the dark, in silence, with an occasional intrusion of touch that frightened him.  A boy who's brain had reached it's limit on what it could support. 

I can tell you that the longer he lived without food or water, the harder each visit became.  In total, he lived nearly 3 weeks with us.

3 weeks that I tried to figure out why I felt so torn about his eating, when almost every disease process we can get, ends with days and weeks of not eating.  Everyday I treat people dying of cancer, of liver disease, of dementia or heart disease, who all quit eating.  It's natural.  So, was it his 3 year old age or the inner mom in me that found it difficult?  Still trying to sort it out.... 

Impossible odds

Manuel was born 12 weeks early to first time parents of a small town in my state.  The trauma from needing a ventilator with such underdeveloped lungs led to permanent lung damage that required a tracheotomy to be placed.  A ventilator is hooked up to this small hole in his neck at all times.  He also was so young, part of his throat hadn't formed right, necessitating that a feeding tube be placed for him to eat.  One complication after another, until an entire year passed in the children's hospital I'm rounding at this month.  A year in the same crib, same room, same nurses. 

Manuel's mother came to this hospital when Manuel did, and hasn't been back to her home since.  She spends each day with him, and each night at a Ronald McDonald home for parents with sick kids.  Her husband, to keep his job, lives hours away, only able to visit every few months.

As Manuel's 1st birthday approached everyone was in good spirits, because it looked like he could finally go home. He'd still be on the breathing and feeding machine, with visiting nurses everyday to their home, but it would be home.  Manuel's mother, who spoke no English when Manuel was born, now conversed with the nurses with ease about her delight to finally get out of the hospital. 

They had to just do one more CT scan. 

The CT scan showed the unthinkable, some spots on his liver that came back as liver cancer. Completely unrelated to his other medical problems, this child was unlucky enough to have a very rare cancer as well.  You can imagine what a hard conversation it was to sit Manuel's mother down and tell her the news.

The nurses tell me that she took the news stoically as the doctor talked about options for chemotherapy that may cure the cancer, if his little body can survive the treatment.  The cancer is rare enough that someone as sick as Manuel has never been treated.  As soon as the doctor left though, her tears flowed strong and bitterly. 

Manuel is due to start the chemo tomorrow.  His parents decided to give it a shot.  I watched Manuel today chewing on a plastic cap of his feeding tube, laying on his back in his crib, having never sat up, or put weight on his legs, having never said "da da" or even cooed. And now, despite all those setbacks, he has to battle cancer.  Doesn't seem fair.

Hard to bear

I’ve been doing pediatric hospice visits this last week.  I knew, as a mother, this would be more difficult than the adult hospice population.  Each newborn I’ve seen with chromosomal abnormalities so life altering, that they won’t survive past a year of age, have pulled at my heart as I imagine what the parents must be feeling, struggling each day.  What has surprised me this week, is not the tough medical conditions, or my own emotions as I relate to being a parent, but it’s the social situations that have caught me off guard.

It seems that each child has come from strained social circumstances as well.  Little Marcus is 8 months old now, but has a rare disorder with his brain. Instead of splitting into two halves, only one large brain formed.  This causes serious mental problems: he can’t coordinate swallowing, so is fed by a tube in his stomach, he has problems breathing and needs oxygen, he is blind and probably deaf, and has seizures everyday of his life.  His mom is just 18, pregnant in her last year of high school, she wasn’t prepared for this form of mother hood.   Her boyfriend has stepped up and is helping out, but they weren’t planning on marrying, or being together after high school.  Life looks so much different now. 

Jamie is only 2 weeks old, born with a similar problem as Marcus, but worse.  She also didn’t form a nose, so there’s a gap from her nose buds to the mouth, a very severe cleft palate.  She also has all the problems Marcus has.  Her young parents had dropped out of high school and were newly dating.  They were shocked when they became pregnant, and even more when they learned of all of jamie’s disabilities.  When I visited this young family they were living with friends.  The tiny apartment housed 2 families, 3 boys ages 2, 2 ½ and 3 and now Jamie and her parents.  It was chaotic as the 3 boys ran around asking about the feeding tubes in jamie’s belly and why there was a whole in her face. No one in the entire apartment was older than 20. 

More than coping with taking care of a child with such complex medical needs, I wonder how the experience of the children dying will affect them.  Each of these children will likely not make it to a year of age.  To be 16 and mom is hard, to be 16 and have to watch your child seize 3-4 times a day, up to 2 hours each time seems unbearable, but then to be 16 and live through bonding and loving that baby and watching them die in a year, seems almost a breaking point.

Neurotic parents

Perhaps my first clue that something was amiss was the complaint the nurse wrote on the chart of "fever, cough, and skin smells like urine".  I walked into a room with 2 parents and 2 boys-  a 3yr old and 16 month old, standing and writing on the chalkboard that is in every pediatric room.  The boys seemed active and by no means really ill.

"So, what's going on with these guys" I asked after introductions.  Mom then handed me 6 handwritten pages of information.  2 pages were filled with the fevers of each child, labeled with the time, the initial for which kid and what they were doing. IE: "c. 101.2, 3:15pm, twitch in right arm and left toe while sleeping"  I'm sure my eyes were as wide as saucers as I glanced thru to the next pages - giving a recent history of the illness each child had from January on - ear aches, antibiotic courses, diarrhea and spit ups.  OKAY, then 2 pages of questions and concerns mom had - including the double underlined "Skin smells like urine". 

"Wow, really organized" I said as I looked again at these crazy people masquerading as parents. I really hardly ever have the problem of too much info, but this was definitely the case- My head was swirling with fevers, twitches, spit ups and urine smells.  What was really wrong anyway? 

As I examined the kids, I found out more disturbing facts - that they both had been diagnosed with unnamed eating allergies- the 3 year old allergic to most foods, including milk (isn't this called being picky in the toddler years?) They were seeing a GI specialist, an endocrine specialist, and a  feeding specialist already, with no clear diagnosis yet.

I tried really hard to find a urine smell- with my nose planted on his arms, his legs, his stomach - praying one of my colleagues wouldn't come in to find me sniffing a little kid. Sure the boys had a cold, like everyone else this time of year- some fevers, some cough - but nothing else.

I left a little afraid for those boys - perfectly healthy, normal boys whose parents are trying so hard to find something wrong with them. All those specialists, not even needed. Unfortunately, it's the parents who need the help!