A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Friday, June 27, 2014

The check is in the mail...

Today we received the bill for small boy's ER admission and one night stay at our local children's hospital.  I'm not sure whether or not this bill includes charges for the physicians who treated our son,  Our portion of the bill: $500.00.

23 June--triannual cardiology appointment

Everything looks good.  Small boy can go back to full activity on 30 June--six weeks after his surgery.  He's also back down to taking one medication twice a day: enalapril.  Small boy had two pieces of suture removed during his appointment--he was brave and let the surgical nurse do it without tooooo much of a fuss.  And....he doesn't need to go back to cardiology for four months.


19 June

Blood work done:  back to baseline

18 June


Steri strips off--and he peeled them all off by himself

Thursday, June 19, 2014

My dad...

...drove out to help last week.  I can't remember the exact timing, but he called one evening (maybe Monday) and then arrived the next night at midnight.  He hopped in his car at 5:30 in the morning and drove straight through. 

It has been super helpful. 

When we first came home after small boy's surgery, I was pretty relaxed (all things considered).  We had gotten out of the hospital in record time, things were looking good, and small boy felt pretty good.  After an appropriate interval we played with our neighbors, went to the playground, ran errands together. 

Then we had to go back to the ICU for an overnight visit.  After that visit, I went into lockdown mode: small boy was no longer allowed contact with anyone other than his big sister, his papa and me; I carried him, made him sit on my lap, and wear a mask when we went to the doctor's office; I yelled at him if he touched anything outside of our house; we stopped playing with our neighbors and our friends.  We became recluses.  I just don't want any more illnesses to send us back to the ICU. 

It is very hard to keep one child in isolation when you have another child who is not.  It is also very hard to keep a household running when you feel like you should be with your child 24 hours a day, checking for nosebleeds every 30 minutes, and temperatures every few hours.  IT just doesn't work. 

And that is where my dad came in.  He has stayed with small boy while I have napped, or gone to the store, or taken big sister to her swimming lessons.  He has helped me with outdoor projects (edging my lawn, trimming my trees, preparing my garden) so that I have something else to distract me.  He has washed cars and watered the lawn with small boy and helped transport big sister to swim lessons and her play practice.  He's watched the kids while papa and I have gone on walks, sponsored a date night for us, and distracted us with his misguided political musings (hee hee!) and general curiosity about what it is that papa does for work.  We've discussed religion and nature and nurture and food.  We've eaten gyros and beans and beans and beans (yes, we eat a lot of beans).  He barbequed for us one night and has cheerfully helped small boy set the table just about every night. 

Thank you, dad!  I think things are slowing down once again.  I think we can survive next week without you. 

Wednesday, June 18, 2014

Steri strips


When steri strips don't fall off and the humidity rises....

Off to visit cardiology to get the incision checked out.

"I've never seen steri strips that haven't fallen off by this point," said the cardiology nurse I talked to a few minutes ago on the phone.

Tuesday, June 17, 2014

Dull is delightful!

Small boy has had no nosebleeds for eight days.  He's been coating the inside of his nose with Vaseline and sleeping with a humidifier.  He's also been off ibuprofen and cefalexin.  

Mama got a bit nervous about him being off aspirin, so, with the approval of cardiology, we restarted that on Thursday.  So far, so good.

One problem that we're running into again is an excess of energy.  Now that small boy has fought off the virus that was causing his fevers and regenerated his hemoglobin (I'm assuming this) he needs some physical outlets.  He's started throwing, jumping, climbing, karate chopping, and trying to wrestle with everyone in sight.

The other problem is hair loss.  Small boy has a noticeable bald spot on the crown of his head and the rest of his hair seems a bit thinner.  I'll ask about it at our next visit.

Monday, June 9, 2014

whiplash

I remember this, now: the unpredictable and disorienting emotional yo-yo-ing from joyful to hopeless and back again.  Things look great, then they look bleak, then there is an improvement followed by another disappointment: I forgot how intense it is, how all consuming. 

I teach (taught?) about homeostasis: how the body maintains itself in a state of dynamic equilibrium.  I just forgot how sensitive the scales are that maintain that equilibrium and how easy it is for things to slip off one end or the other--particularly after a major surgery.  I forgot the sense of desperation that arises when I see that equilibrium starting to slip in my son; the sense of joy when it rights itself. 

My current level of involvement in my son's bodily functioning and daily activity takes the idea of helicopter parenting to a whole new level!

This, too, shall pass...but, it will take a while.  It will take a while for me to once again trust my son's body to function properly.  It will probably take longer than it needs to.  And that is o.k. 

follow up cardiology appointment

So, after a bit of a bumpy few days, we finally made it to small boy's first follow up cardiology appointment. 

Overall: things look good. 

Small boy's incision and chest tube sites are healing nicely.  His blood pressure is fairly normal.  His heart sounds good.  His liver seems to have shrunk down from where it was on Saturday (although it is hard to tell for sure since a different doctor has done each exam).  His heart rate is still a little high, but that was expected.

He is still on complete activity restriction (no jumping, climbing, falling, biking, etc...) but the doctor said he could stop taking one dose of his "yucky drug" each day.  So now he's at two doses of enalapril (blood pressure medication) and one dose of furosemide (diuretic) a day.  Today was his last day on the cephalexin (antibiotic) and the doctor advised that we hold the aspirin until the weekend...in hopes of preventing further nosebleeds. 

The good news was that small boy's truncal valve looks a bit better than it did on discharge.  As reported in the past, his pulmonary conduit looks great.  It has looked great since surgery. 

The truncal valve (the one that is in the aortic position) has been a bit trickier.  After considering the options and testing the valve in several ways, the surgeon elected to try to repair, rather than replace it. 

The valve had two problems: it had a hole in the middle of it, so blood could flow the wrong way (back into the heart) when the heart was not contracting, and the leaflets of the valve did not open very far, so the heart had to work harder to squeeze blood out to the body during contraction.    The surgeon tried to fix both problems.  At the conclusion of surgery, it looked as if he had succeeded completely.  By the time small boy got his discharge echo, however, it looked like both parts of the repair had failed. 

We were told that, sometimes, as swelling resolves after surgery, things start to look better.  Well, today, things looked better.  While there is still a hole in the middle of small boy's valve, allowing the same degree of backflow that he had before surgery (moderate), the backflow is more confined: it forms a narrower jet than it did before.  Apparently this is a good thing.  The best news was that his valve now seems to be opening much wider than it did before his surgery.  In fact the degree of stenosis (narrowing) is back to where it was just after surgery (mild).  This means that his heart won't have to work so hard to pump the blood out to his body. 

Our cardiologist predicted that the repair should last for "many moons."

We celebrated with soup (small boy), a sandwich (mama) and smoothies (small boy and papa bear) in the hospital cafe.

My grandmother just called..

..and said she was thinking of us and praying for us. 

"Of course it is hard," she said. 
"Of course you worry for your son."
"Of course you don't want your daughter to bear that burden." 
"It is good that you have support."

I feel lifted up.

"Without the Illusion of a Safety Net"

Now that we're back home, again, feelings have started making themselves known: frustration, fear, anger, remorse, resignation.

FRUSTRATION

After a mini bleed at 3 am on Saturday, small boy's nose had been calm.  Nevertheless, I "slept" by his bed last night, checking on him periodically.  Around 7, with small boy still asleep, I climbed into my bed and turned things over to Papa bear.  Thirty minutes later, I heard small boy's typical yalps at discovering an incipient nosebleed and Papa bear's instructions to sit still, calm down and stop grabbing his hands.  It knocked me back, just when I was starting to feel relieved that the nosebleeds were being held at bay, at least temporarily.

FEAR

The hard part about all of this is the uncertainty.  Nothing that is done is a definitive fix.  All of small boy's clinicians are doing the best they can to engineer the most positive outcome, but there are no guarantees.  I don't think anyone even knows what the most positive outcome looks like.  I do know what it does not look like: a boy with no heart defect.  Small boy will always have a heart defect.  He will always have to be monitored.  But, the question is, what other problems will he have?  Does the best possible outcome include activity restrictions? does it include nasal cautery?  does it include continued isolation? How do we balance the need to prevent another massive nosebleed (encourage clotting) with the need to prevent clots on his newly operated on aortic valve?  What will happen if we continue withholding aspirin? an aortic clot? a thromboembolic stroke?  MI? nothing?  What will happen if we start giving it again?  Papa bear and I cannot monitor him every night to ensure he doesn't have another huge nosebleed.  We also need sleep.  

This morning, after checking in with the men around 8, I went on a jog.  Actually, it was more of a walk with a few little attempts at jogging thrown in.  I have the cardiovascular and muscular capacity to run.  Panic, however, robs me of the ability to breathe; my shoulders inch up towards my ears; my neck tightens; my legs and arms turn to lead; and I have to slow to a walk and focus on breathing. 

ANGER

As I "ran" I started thinking about this morning: All night long, I watched over small boy and he had no nosebleeds.  As soon as I turned surveillance over to  Papa bear, BAM!  nosebleed. Then I started thinking about Friday night:  I've been with small boy pretty much non-stop since he got out of the hospital.  I finally leave for a few hours and BAM! blood bath.  Not only was it a huge, bloody mess, but the blood loss earned small boy an overnight in the PICU.  And, perhaps it could have been prevented.  If papa bear hadn't decided he needed sleep and put in his earplugs, he might have heard small boy, standing right next to his head (that's where the splatter trail ended) calling for him.  He might have heard small boy even earlier when he woke up crying due to the nose bleed.

That made me think about the labs small boy had to have drawn in the ER.  Small boy hates the needles.  He hates the IVs and he makes pitiful little noises when they get done.  And papa bear turned white as a sheet and had to leave the room.  So I sat with small boy in my lap trying to read him his new book to distract him while my clenching my hands into tight fists so he couldn't feel them shaking.

REMORSE

And then, I started thinking about small boy's fever.  If the blood loss (coupled with the fever) is what earned small boy an overnight in the PICU, the fever is what triggered the visit to the ER.  And the fever happened on my watch.  It now appears that the fever was some sort of virus: A virus small boy caught when I took him to the park, or when I took him walking with friends and their small children (I don't think it was our morning of errands, because viruses usually take more than six hours to trigger a fever)  And, perhaps it could have been prevented.  If I hadn't decided I needed some social time.  If I hadn't decided small boy's need to play outside was more important then his need to stay away from germs, he might not have caught the fever that made the nosebleeds more likely and triggered our visit to the ER.

And, papa bear isn't the only one who needs to leave the room sometimes.  I opted not to hear the full description of small boy's surgery during his preoperative visit.  I refused to sign any consent forms.  Papa bear got to do all of that this time around.  Some things are just better left unseen, unheard, unsaid.

RESIGNATION

How can I insist that papa bear be stronger or braver or wiser than I am?  How can I be angry?  We are both only human.  We are both facing down demons, together, the best we know how. 

There is no one to rage against.  No one holds a larger share of the blame.  We do the best we can and then we wait to see what will happen.  And that, my friends, is hard.  It is very, very hard to know that no matter what we do, no matter who we pull in to help with his care, we might not be able to save our son; and that our best efforts, flawed and human as they are, may, in fact, be the very thing that does him in.

I'm reminded of Harriet Brown's NY Times essay from 2008.  In it, she talks about the aftereffects her daughters' brushes with death had on her.  She describes how these experiences forever shattered her illusion of being able to protect her children.  No matter how many car seats, helmets, immunizations, or green vegetables we apply to the equation, our children are still vulnerable.  That doesn't mean that we do away with car seats or helmets or immunizations or green vegetables.  It just means that we recognize that there are threats we can't identify and problems we can't solve.  It means that when we parent, we do it, in Ms. Brown's words, "without the illusion of a safety net."

Sunday, June 8, 2014

Discharge

Overnight was boring, according to papa bear.  Small boy's temperature stayed down and his labs this morning were stable.  He'll get another set of labs later in the week to make sure his hemoglobin and white blood cell counts are going back up.  Although his heart rate is high, his blood pressure is normal and the thought is that his heart is beating faster than normal because he is anemic.  As his red blood cells regenerate over the next week, his heart rate should go down.  

They suggested a multivitamin with iron to help his red blood cells regenerate (got that covered!) accompanied by Miralax (multivitamins with iron often cause constipation).  We are to call them if his temperature goes back up again.


Saturday, June 7, 2014

Overnight

So.... The doctors finally believe me when I say that small boy had a massive nose bleed.  The one other time he had a major bleed (and earlier today when I was  talking to the urgent care nurse) I got a lot of knowing nods and hmmmms...You know the type, the type that says, "sure, you think he had a big nose bleed.  Every parent thinks their child's bleeds are major."

This time I have proof.  On Thursday, small boy's hemoglobin was low at 10.  Today it is all the way down at 7.  

So, even though small boy's X-ray and echo were all clear, the physician decided to keep small boy overnight at our local hospital.  That way they can help us watch for new nosebleeds, and if he has another one, he's right here to get a transfusion.  They're also going to run some liver function tests since his liver is still enlarged and it wasn't back in January when small boy was last seen by his local cardiologist.

Woo hoo! PICU number two!

I'm actually a bit relieved.  The last few days have been a bit stressful.

At ER

The quickest way to access a cardiologist  on the weekend when you've been having a fever for three days.

X-rays done
Labs and echo next
Cardiologist en route

The fun never ends :(

just kidding

Fever's back.

We get to go to urgent care....again!

An exciting twelve hours

We had an eventful night last night!  Things went from sad to scary to proud to relieved and relaxed in quick succession. 

SAD

It all started around 8:30 when I told the kids I was going to a bookstore with a friend.  To give a little background: when we learned small boy would be needing surgery, I began clearing my schedule and my life of all non-essential activities and commitments and we scheduled his operation during the week after my teaching semester ended.  The thought was that I would devote all of my time and energy to whatever small boy needed.  So far this plan has worked well.  There is one major challenge with this strategy:  It is very difficult to focus 100 % of my energy on a very scary and difficult situation.  Papa bear has work obligations that require some of his attention and allow him to, if only for short stretches of time, escape from the terror of monitoring small boy's every moment.  I currently have no obligations other than caring for small boy, and this is a good thing as he still requires constant monitoring.  However, last night, I needed a break.

When small boy heard I was leaving, first he asked if he could go with me, then he started sobbing....and sobbing....and sobbing.  Now, normally, I am a hard, cold woman and would have left him with his father and sister knowing that he would calm down eventually.  However, he's been having nosebleeds during the past week and then there is that little thing called open heart surgery that happened a few weeks ago.  The upshot being that it is not good for his health to cry:  the tears loosen the scabs in his nose leading to more nosebleeds and crying makes his healing heart work harder.  So, I stayed for a bit and held him. 

"Does some part of your body hurt?" I asked him. 
"Are you sad?" I asked him.
"Are you scared?" I asked him.

No, he shook his head, he didn't hurt.  Yes, he nodded, he felt sad, and yes, he felt scared. 

"Are you sad about mama leaving?" I asked him, eliciting only an anemic nod.
"Are you sad about your surgery?" I asked him and finally got a verbal response: "Yes."

And then, between sobs, it came pouring out.  He was sad about his surgery and scared about getting his chest tubes out.  He didn't like the way it felt.  It hurt.  Apparently, he had not been completely sedated when they were removed.

"Oh, my brave boy," I crooned.  "You have been so brave this whole time and sometimes you just need to cry.  It is o.k. to be sad.  It is o.k. to be scared.  Those were scary things that happened.  That sounds like it didn't feel good."

After 15 minutes or so, he had calmed down and was enticed by his sister, who had come into his room, scared by his sobs, to go into her room and play in the cave she made for him under her loft bed. 

When I left around 9:15, they were playing under the loft bed with their papa.

SCARY

When I got back around midnight, I noticed some blood spatters on the floor just inside the entrance from our garage.  "Oh, small boy must have gotten a nosebleed," I thought.  "That's not too surprising, given all of the crying he just did, but it is a little unusual that Papa bear didn't clean it up." 

After I put the four books (one for each of us) I had bought to celebrate our upcoming wedding anniversary out at our places at the table, I glanced toward the bathroom and noticed the blood, lots of blood, all over.  As I walked over to the bathroom, I realized there were more blood spatters on the floor leading from the dining room to the bathroom, and in the bathroom were bloody tissues, two large clots (4" by 1") and  smears on the sink basin. 

"Oh, my," I exclaimed starting to get irritated that Papa bear had not cleaned up the mess, and I headed into our bedroom.  As I walked in, I could see Papa bear's sleeping form, and then I realized that there was another trail of blood leading from the bathroom to the head of the bed. 

"What happened here?" I wondered aloud.

Papa bear snored on, but I heard a small, very satisfied voice from down the hall: "I did it!  I took care of it all by myself!"

PROUD

As I walked down the hall to small boy's room, I noticed more blood spatter on the carpet.  I turned on the lights in his bedroom to find my little imp sitting up in bed, grinning in a very self-satisfied way.   The front of his shirt was soaked; his cheeks, chin, nose, and upper lip were crusted with dried blood; his hands, folded on top of blankie, looked like they were covered with dark henna designs; And in the red blanket on top of him was a small pool of dark red and another large clot. 

"What happend?" I asked again.

"I had a bloody nose," he explained.  "There were lots of clogs in my mouth and on my face and I pulled them out.  When I woke up I cried because there was blood.  Then I found papa and said, "papa, papa, papa!" but he didn't wake up.  So I took care of it all by myself!" he concluded with pride.

Sometimes small boy does get bloody noses during the night.  He had one two nights ago, too.  But it was much less severe.  Of course, I was sleeping with him at the time and was able to pinch his nose shut as soon as he started crying. 

When I asked him how he took care of his bloody nose, he just repeated that he pulled the clogs out.  When I asked if he had pinched his nose, he said no.  He must have just taken the tissues from next to Papa bear's bed, pulled his step stool up to the bathroom sink and let it run it's course: hence the spatter all over our house and the copious quantity of blood.  

RELIEVED

After determining that small boy was o.k.  I called for Papa bear to come and help.  He was a little groggy, when he walked in, but we were able to work together to get the job done!  He used Resolve to clean up all of the blood spatter so big sister wouldn't be worried when she woke up, stripped small boy's bed and put on new sheets and started the laundry.  While he was doing that, I checked small boys pulse and breathing and temperature, helped him strip down and wash off in the bathtub, and called the 24 hour nurse help line (That was Papa bear's suggestion when small boy started complaining that his back hurt). 

By then it was 1:30 in the morning and the events of the day started catching up with small boy.  A few minutes after Papa bear suggested that we give him orange juice and cookies ('cause that's what you're given after you donate blood!), small boy started shivering and his cold fingers and toes began turning blue.  I stripped down and snuggled small boy next to me underneath the quilt I took with me to college.  I held his cold hands in mine and tucked his cold feet under my leg while we watched episode after episode of Ninjago, all the while offering him alternate drinks of lemonade and Junior Mints (we didn't have any cookies in the house).  It took nearly an hour for his fingers and toes to warm up.  During that time, we also gave him both aceteminophen and ibuprofen to bring his fever down!  Finally, around 2:30, with warm fingers and toes, but still running a fever, he agreed to turn off the lights and snuggle to sleep on our playroom couch. 

Around 3:30 I moved the two of us into his bed (Thank goodness we got him a new mattress and bed frame!  I can actually sleep with him comfortably now) and we dozed until around 5 am when he woke up super sweaty, gagging, and asking for water ( I think another large clot had gotten loose and was sliding down the back of his throat).  He got a bit upset that I didn't understand exactly what he wanted as soon as he wanted it (I thought he needed to puke, so I hustled him into the bathroom) and started crying a bit again...restarting his nose.  Fortunately, both Papa bear and I were right there, so while I pinched his nose shut, Papa helped him get back into a new pullup and his PJs after he went potty.  The bleeding was hardly worth mentioning.  He didn't even soak through one tissue.

As we settled back into his bed, he leaned back against me and said, "My eyes are going to sleep now." 

A few minutes later he assured me that his nose was fine (Papa had to interpret for me, cause I couldn't understand) and drifted off to sleep. 

At eight, when I woke up, he felt cool to the touch, even though the fever reducing drugs should have worn off.  At nine, when I woke up again, he still felt cool.  When he finally woke up, around 10:30 we took his temperature: completely normal!

Of course, we called the on-call CV surgery PA (since we have not yet seen small boy's local cardiologist, they are still the folks we get to ask about heart related issues) in the morning to ask about medications.  He advised that we carry on and not adjust anything until we see our cardiologist on Monday.

RELAXED

Both of the kids loved the books I got for them (Big sister read both, or rather she read all of small boy's and half of hers before I got up this morning).  As small boy was waking up, he asked if he could help make a brown smoothie for breakfast.  Thankfully, we had some frozen bananas, so after helping make it, he got to eat one of his favorite breakfasts--and look at all of the pictures in his new book at the same time.  Now the two of them are back in big sister's cave playing games on big sister's kindle and mama's kindle.

Papa bear is preparing a movie for us to watch next, and popping some corn. 

The four of us are going nowhere and doing nothing for the next little bit....much to small boy's chagrin and big sister's delight.  Now that his fever is gone, he's starting to run (literally) around the house and shriek in delight at his gaming successes.  I just want to keep him sedate enough for long enough to allow his nose to heal!

BONUS: I referenced one children's book and one children's TV show in this post.  Gold star to anyone who can ID the quotes and the sources.

SIDE NOTE:  I'm glad I stated giving small boy multivitamins with iron in them yesterday morning after learning that his hemoglobin was a little low!  He got another one this morning.

Thursday, June 5, 2014

Labs good

Normal white blood cell counts suggest he is not fighting off anything bacterial.  Low hemoglobin is not unusual for him, but suggests we should consider some kale, or steak, or a multivitamin with iron. Elevated CRP indicates inflammation, which is expected to some extent after surgery.

Taken together, today's exam, X-ray, and blood work suggest small boy may be fighting off some sort of viral infection.  His heart and surgical wounds do not seem to be involved.  We'll see what his temperature does tonight into tomorrow ... and hope that he didn't pick up anything else at the doctor's office today (he did wear a mask and we sanitized our hands multiple times during our visit).

TG

Small boy's chest X-ray this afternoon looked clear.  His liver seems not quite as enlarged.  His fever is controlled.  We are still waiting on his lab results.The best part of the experience: finding out that the dark area on the bottom right of the picture is gas in small boy's stomach.  He was delighted to see a picture of the gas he will pass.  

(Title of post is a tribute to a special family member who introduced me to the phrase.... Any guesses?)

Wednesday, June 4, 2014

Fever...

Small boy has been doing so well the past few days that after we went walking with friends, I decided to take him with me and run some errands this morning.   We got his passport picture retaken, made some copies, returned some stuff to the store, and stopped by the doctor's office (to get some forms signed for me).

When we got home, I popped some corn and put in a movie.  An hour into the movie, I realized small boy felt warm.  Ibuprofen brought his temperature down for a while, but it was back up this evening, just in time for another dose of ibuprofen...which brought it back down again.  His fever was high enough to warrant a call to the surgical team, who indicated that if his fever is not gone within 24 hours, we should take him in to get blood work and a chest. X-ray.

Of course all of this happened after I called his doctor early this morning to ask about interactions between two of the drugs he's on (I finally read the backs of the bottles--there can be some interactions, but we were told to continue with our current regimen) and to get reassured about his liver being enlarged.

My jaw hurts from clenching.

Monday, June 2, 2014

Anxiety

Things seem to be going well, and yet I still feel on high alert:

Has small boy pooped yet today? Why did his nose bleed?  Why is his liver enlarged?  Is it getting bigger?  Is his conduit failing?  How is his pain level?  Did the little boy in the car next to us just sneeze?  Did I just hurt him when I tried to pick him up?  Am I doing him a disservice by ramping down his pain meds?  

And the internal monologue goes on....

I remember this from last time.  It takes a while for me to ramp back down from the intensity of surgery and the ICU.  It takes a while for me to recalibrate to our new reality.