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)

Saturday, October 25, 2014

Oedipus, much?

This morning, as I pulled small boy onto my lap, I told him I loved him.

Me: "May I always be your mother?"
SB: "Until I grow up."
Me: "What will I be when you grow up?"
SB: "[my sister's] mother."
Me: "And what will my relationship be to you?"
SB: "Your husband."
Me: "Really?"
SB: "Yes.  Maybe then Papa will have died."

Hmmmmm.......

Tuesday, October 21, 2014

semi-annual cardiology report

Yesterday visit to the cardiologist was: boring!

Boring visits are the best.

Overall: Small boys heart rate is down (66) BP is down (108/48) and heart looks good.  His pulmonary trunk (that was replaced) still looks pristine.  His aorta/truncus still looks funky, but is working well.  The walls of his heart are not thickening.  The chambers of his heart are not enlarging.  His heart shape is re-normalizing as his heart re-adjusts to having an easy path for blood to flow from his right ventricle to his lungs.

Small boy is still ...small (height = 15%ile, weight = 8%ile).  However, his bald spots are gone: his hair has completely filled back in.

To celebrate, I took small boy on a tour of my school (he wanted to see my desk), bought him a chocolate bar at the snack kisosk, and we rode the bus home together.  I forgot how much fun the world is when you are five years old: small boy wanted to explore every rock, stairwell and window in the hospital.  We counted 10 motorcycles, 1 ambulance and 5 busses.  We explored the train tracks and jumped off of boulders.  It was a good day.

The best news is: we don't have to go back for 6 months!!!!!

Thursday, October 9, 2014

a day like this



goodbye, Sandra Shaw Courter

Monday, September 1, 2014

impact

Small boy's heart defect and its treatment have affected him and our family in some very obvious and dramatic ways.  They have also affected me more obliquely: they have altered the course of my professional life.

After Small boy's initial diagnosis, I started learning as much as I could about his particular heart defect and about heart function in general.  A few years later, when it became obvious that my foray into science writing was ill-timed and I decided to go back to teaching, I applied for jobs teaching Anatomy & Physiology.  Although I had not taught those courses before, I was able to give a really good job talk based on what I had learned about the heart.  I got hired.

During Small boy's treatment, starting with his prenatal diagnosis, I encountered physicians doing useful, interesting things.  As a healthy child and young adult, I saw my annual trip to the doctor as a bit silly.  The doctors who continue to care for my son make a very real difference in his life, and mine.  During our many visits to the clinic and hospital, I had the chance to observe what doctors do on a daily basis and how they go about doing it--and I became interested.  The profession began to look both engaging and enjoyable as well as useful.

After a few years of teaching Anatomy and Physiology, I began to get jealous of my students....most of whom were going on to apply what they learned in my classes as nurses.

I also realized that without more schooling, I would have neither the job security nor the financial means to adequately care for my son, should I become the sole provider in our family.

All of these factors, as well as many others, led me to apply to medical school a few years ago.

Two weeks ago, I started classes.

As I have walked through the children's hospital to my classroom in the morning during the past weeks, I have found myself tearing up.  Before last week, I didn't understand what I was getting into (and I still now only see some of the bare outlines of what this new venture will mean in my life).  Before last week, I thought people went to medical school to learn how to be a doctor.  Last week, I realized that when you go to medical school you don't learn how to become a doctor, when you go to medical school, you actually become a doctor.  Those two things are very different.  Very different, indeed.

Last night, it finally hit home that during my training and afterwards:
I will be with people when they are born.
I will be with people when they die.
I will be with people when they face some of the most excruciating decisions of their lives.
I will witness, and in some cases, be a part of, some of the most intimate and personal details of people's lives.

It is a bit much to absorb.

Thursday, August 28, 2014

Hair Growth

Small boy's two bald spots are showing some signs of regrowth.  The new hair growing back is super fine, and is about 3/4 inch long now.  The bald spots still look bald, even with the hair--and the one on the crown of his head is quite tan from the summer sun. 

I'm sticking with my hypothesis that these bald patches were the consequence of the physical stress his body went through.   Now that his body has renormalized to a large extent, he is regrowing the hair he lost.

Tuesday, July 22, 2014

post recovery draw down

Now that small boy is back to himself, I've entered recovery mode.  I knew there would be a period of re-adjustment after his surgery....I just didn't realize that I, too, would need to readjust. 

I mean, I knew that right after small boy's surgery, we'd coddle him a bit to make sure that he recovered physically.  I also knew that I'd be intensely involved in his every moment.  As a result, I anticipated that we'd have to do some "re-training" after his recovery period was over to shift his behavior back to acceptable norms. 

What I didn't anticipate was how hard it would be for me to turn off my hyper-involvement in the details of his life.  I forgot how difficult it is to shift from crisis mode to normal-living mode.  Needless to say, it is a little bit emotionally bumpy around our house right now!!!!

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. 

Saturday, May 31, 2014

New medication

So, yesterday I noticed that small boy's center chest tube site seemed a little irritated.  Papa bear got a look at it this morning and agreed.  Several phone calls and picture texts to our hospital, and one visit to urgent care later, and small boy has started another course of antibiotics.  

The surgery folks didn't seem too concerned, but the pediatrician seemed a bit alarmist in her assessment.  Of course, it probably didn't help that she had never seen us before and was being asked to deal with a medically complex little boy without complete information.

In any case, we will wait and see how things go.  The doctor today also noticed that small boy's liver is slightly enlarged. We're not sure if that is something new or whether that was present before his surgery (i should probably know this, but can't remember...and its probably in his records somewhere, but his records are rather thick and we didnt go through them).  Unless he starts to get worse or stops improving, though, the folks st the hospital where the surgery was done suggest that we just wait for his follow up cardiology appointment on the 9th.

Tuesday, May 27, 2014

good night, good day

Small boy slept well last night: no coughing fits at all, out at 9:30, up at 7:30.

Today he had his follow up appointment with his primary care provider...at our house.  I'm quite impressed with our current health care providers.  Since small boy is supposed to avoid germs for the next two weeks, I thought it would be silly to take him into the doctor's office, so I asked if she would make a house call.  And she did!

All looks good.  His incision and chest tube sites are all healing nicely.  He's down to just ibuprofen for pain control and things are moving nicely through his gut.  I think the hardest part is now upon us: keeping one very active boy still for 6 weeks so his sternum can heal.  I don't know how many times I've told him, "don't run," " no jumping," "no climbing," "no body checking the neighbors," etc.., already, and he still needs pain medication!

Monday, May 26, 2014

Good start, rocky middle

Small boy was up for a bit, really early this morning (5-5:45) coughing and coughing.  We finally got him to settle down by giving him water and warm tea.  He slept for a while, then got up and got dressed on his own and started playing with his sister on her kindle.

We have had a low key day with very little pain medication.  He put together puzzles with grandpa, watched movies with grandma and drew with chalk with our neighbors out in the driveway.  Now he's got a little fever.  After loading him up with staggered doses of ibuprofen and acetaminophen (the acetaminophen required a bribe of ice cream), I've tucked him in for a late afternoon nap.

Sunday, May 25, 2014

Best and worst

On the car ride home, I asked small boy what the best part of being in the hospital had been.  His response: watching movies with my sister.  Then I asked him what the worst part has been.  His response: getting my stickers off.

Unfortunately, he came home with three band aids (one for each IV and one got his most recent blood draw) and a mass of tegaderm (clear plastic bandaging) covering the gauze over his chest tube sites.  All of them had to come off today.  Although it is not super sticky, the tegaderm was the worst, mainly because there was so much it for him to worry about and it was stuck to some of the steri strips holding his incision together.  He got a little worried when papa got out the kiddie scissors to cut the tegaderm away without pulling off the steri strips.

With the help of the movie Brave (thanks generous friends) and sitting on mama's lap, he made it through.

To celebrate, he went outside, drew with chalk on the sidewalk, passed a soccer ball back and forth, strolled down to the playground, cried when he was told he couldn't play at the playground, and shared some Popsicles with our neighbors.  Now, he is napping while we wait for grandma and grandpa to arrive.

 I think I'm going to cut back on his pain meds tomorrow so he does not feel inclined to climb the jungle gym, ride his bike, run, and dig in the dirt (we're currrnyly giving him overlapping doses of acetiminophen and ibuprofen).  The first three activities are off limits until his breast bone heals (6 weeks) and the last is off limits until the incisions from his chest tubes scab over.  Right now, they still gape open and leak a bit.  We were told to expect this and to not cover them.  Apparently, they heal best if left exposed to the air.  We are having him wear clean, old cotton t shirts  to protect the sounds from contamination.  The last thing they need is s big of dirt or sand getting in them.

Saturday, May 24, 2014

Sitting in the pharmacy ...

...in our hometown, waiting for small boy's prescriptions to be filled.

The kids giggled and played in the back seat the whole way home.

:)

Read the echo reports....

Small boy's pulmonary homograft replacement worked wonderfully, completely correcting his anatomical and physiological  problems for now.  His aortic/truncal repair did not make things worse, but, despite our high hopes as he came out of surgery, doesn't seem to have improved things much.  We're unsure whether this is because his heart is working extra hard right now (in which case, things might start looking better in the next few weeks) or whether part of the repair failed, i.e. a stitch came loose (in which case the surgery to place a mechanical valve will occur sooner than we had hoped).

In any case, small boy is walking around his room, playing with his sister and getting into stuff.  

The docs adjusted the dose of his blood pressure med this morning.  As long as his blood pressure looks good in the next little bit, were heading home this afternoon.

Small boy will go home on aspirin (to prevent clots on his thinned down valve leaflets), a diuretic (to keep his blood volume down), and an afterload reducer (to relax his vessels, further reducing the work of his heart).

.....

And now, two hours later, we have gotten the green light to go home....  We just had ice cream drumsticks with four royal friends to celebrate and small boy and big sister had fun showing their friends the garden at the hospital.

Friday, May 23, 2014

Not so fast...

While small boy's echo showed his new pulmonary conduit doing just fine, there appear to be some issues with his aortic repair.  So, for now, we are staying in the ICU, not moving to the step down unit.

Progress towards that magic H word

Chest tubes out.
Pacing wires out.
Discharge EKG done.
Discharge echo scheduled.
3 sausages, 1 milk,  1slice of peanut butter on raisin bread, 1scrambled egg, 2 Girl Scout cookies, and 12 oz water down the hatch.
Our nurse is looking for a wheelchair so we can take a little walk downstairs to see the live radio fund raiser and go outside.

Morning update

Small boy had a restless night.  He kept coughing (a good thing) and turning himself from one side to  the other (another good thing).  He is less guarded about moving and has asked to put on his clothes and sit up several times already this morning.  After getting him dressed, I transferred him into my lap in the recliner and we watched Frozen...again.

 The most challenging thing this morning is that he is not allowed to eat or drink anything until he gets his chest tubes removed.  He has to be sedated to remove them (all of them, as of ten minutes ago.  Apparently, the leak in his right lung has sealed back up.) and you can't have anything to eat or drink for quite some time before sedation.  He keeps looking at me with his big blue eyes and asking for a drink in a pitiful little voice.

After Frozen finished, small boy agreed to stand up so we could transfer him back into his bed.  This is the first time I've gotten him into and out of bed by myself.  It went well and now he's watching.....wait for it......Frozen, again.  Anything to keep him distracted until the CV surgery team, who will be taking out his chest tubes, can coordinate with the ICU team who will manage his airway and control the sedation while the tubes are removed.

I think I'll go get breakfast while they pull the tubes (small boy will be pretty out of it for a while).  If things go well, small boy and I will go outside with his nurse later this afternoon.  He'll get to walk around in the fresh air!

Thursday, May 22, 2014

Grins

Great aunt got a big grin when she arrived an hour ago.  It is good to see small glimmers of personality returning.

Afternoon update

When I arrived around 11am, small boy was sitting up in an easy chair, watching a movie while papa sat nearby.  In short order, he needed help to stand up, shuffle to his little potty and pee.  When he sat back down, he snuggled into my lap.  Midway through Sesame Street he fell asleep for about 45 minutes.  He woke up just before his physical therapist arrived.  She had him stand up and play at his bedside for a while before he sat back down in a preschool sized chair to eat his lunch: 4 mini corn dogs with catsup, a bowl of peas, and half of a chocolate milk.  After eating, I helped him get back in bed, read him a book and turned on Scooby Doo.  He just now asked me to help him sit up and is attempting to adjust the TV.

His nasal cannula has been disconnected, his chest tubes are still in, and he seems so much more like himself than he did yesterday.

Feces and urine

What a name for a post...  Last night little boy got a suppository to help him poop. He hadn't yet and seemed uncomfortable. It worked eventually, though it was a challenge to get him on a potty. He sat on a children's training potty on his bed. He seemed more comfortable after and was willing to drink significant amounts for the first time in many hours. Which likely is a reason he had to pee later. As I was partially asleep and the lights were low, I didn't notice there was a lid on the little urinal he had to use. Pee everywhere! Oh what fun. He then slept pretty solidly from 10:30 to about 6. That was nice! This morning he seems a little better, though I think the chest tubes are still causing significant discomfort. The surgery PA just came by and said the chest tubes might have to stay in another day as the heart area tube still has bloody fluids coming out and one lung might have a slight injury causing a leak. We'll see. He doesn't have a central line in anymore, so that had to a blood draw the traditional way this morning. He survived it well.

Wednesday, May 21, 2014

Pain and progress?

O boy keeps chugging along this afternoon. We just read a fairly long book, which he was able to keep interested in. I wasn't sure he'd make it. He's struggled more today. I think taking him off the morphine has just meant more pain. He's less willing to sit up, though he's been pushed/pulled to sit up a couple times despite his protests. He's also less willing to drink/eat, which may be due to a need to poop--drinking some prune juice now to help that along.

He got his central line out, the one in his neck. He really didn't like the process, but I hope it feels better now (not clear whether it does or not). The nurse also took the oxygen canula out of his nose for a while, but the oxygen numbers appeared to drop a bit afterward, so it went back in. O wasn't thrilled about that. The amount flowing in has gone down and the numbers are staying high, so we'll hope to get rid of it tomorrow.

His big request of the afternoon was to get the tubes out of his chest. He asked something like, "Can we take these off?" Hopefully tomorrow!

Rounds

Small boy is pretty tired.  He wakes up for maybe half an hour at a stretch before drifting back out again.  The last time he was up, he watched a little Mickey Mouse Clubhouse, asked to turn on his side and complained about his nasal cannula (the tube delivering oxygen to his nose), the splint protecting the arterial line inserted in his right hand and the tape holding the IV in his left hand.  When I asked, he agreed that I should tell his doctors and find out what they could do about it.

The doctors agreed to take out his arterial line and wean down his oxygen. They've cut him back to half a liter, and if he tolerates that, will remove the nasal cannula.  They also decided to remove his renal and head sat patches (they measure how much oxygen he's using), and pull his central line (it is a line that goes into his neck).  In addition, because his blood pressure is still too high, they've increased his dose of enalapril (his afterload reducer) and given him some more lasix (a drug to make him pee off more of the extra fluid that is helping make his blood pressure high).  They've also decided to switch him over to the catoralax (the non-narcotic IV pain drug).  Unfortunately, the IVs in both of his hands will stay put.

The nurse already took off his head patch and took out his arterial line (this is the line they have used to get blood for his lab work.  He's currently down to labs once a day, instead of every 4 hours, so that should be O.k.  He'll just have to get a stick for his future lab work).  The head patch is applied with strong adhesive, some of which had stuck to his hair.  Even with the adhesive remover, taking it off hurt....so did removing all of the tape holding his arterial line in place.  But now, he's two lines down and sleeping.  I promised him he would get a break after the nurse took out the arterial line. She'll take off the renal patch and take out the central line later.


Morning update

The men had a calm evening together.  The nurses turned the lights off last night, so everyone got a bit more sleep (They were not turned off the previous night).  Small boy did manage to pee a few times, and as of right now, he's output more fluids than he's taken in since midnight (This is a change from the past two days).  Hopefully, he'll be able to avoid the extreme post-surgical edema (puffiness) he experienced after his last surgery.

There is still a significant amount of drainage from his chest tubes (There are three: one to each lung space and one to the region surrounding the heart),and he seems to have developed a small leak in one of his lungs/pleural evacuation tubes although the  CV surgery PA tells me it is small and it will go away (He came in earlier this morning to adjust things and will be monitoring small boy throughout the day).  While the drainage from his mediastinal (heart) chest tube has become more clear, the pleural tubes (lungs) are still draining a lot of blood.  All of which is to say that small boy will be keeping his chest tubes today and he will not be switching to catorolac (non narcotic, IV pain medication--it's been described to me as IV ibuprofen) as it is not given when there is significant bleeding.  Instead he will continue with morphine as needed.  One downside to the morphine is that it shuts/slows down the gut, making a poop less likely....and the doctors are starting to mention poop as a possibility.

Small boy still merits a nurse all to himself for today.

Tuesday, May 20, 2014

Evening status

Fun fact: morphine makes some people's faces turn red.

Outcome: small boy's afterload reducer appears to have  brought his blood pressure down.

Achievement: small boy finished off his second jello as well as a smoothie.

Goal:  pee

Tonight's superhero:  Papa

Dinner and a movie...

Small boy just requested to sit up while he ate 1/2 a jello cup, drank 1/2 an icy smoothie, and sipped some beef broth.  The act of sitting up and then the act of lying back down hurt a bit, as evidenced by pitiful whimpers.  Now, he's once again watching Frozen.

Docs just stopped by

They're doing the day shift-night shift handoff.  Since they stopped the infusion of the sedative and afterload reducer this morning, small boy's blood pressure has stayed a bit high.  The thought is that his body is used to having an afterload reducer on board (he's been on one ever since his first surgery) , so they're going to put him back on the same drug he was on before, with the thought that he'll be weaned off of it after we leave to allow his body to gradually adjust.

Otherwise, we're just chilling, watching Despicable Me.  Papa has gone off to stretch his legs.

OT came by

The OT came by. She asked O boy to move his arms around, which he was able to do well. She then helped him sit up - he shared that he was worried it would hurt. Once he was up, he seemed content though. He looked around and spotted his unfinished lunch and said he wanted more. He fed himself the rest of the chicken broth, downing it quickly and picking up the bowl to drink the remnants. He also ate most of his jello. OT and nurse seemed impressed. He was clearly hungry. Laying back down seemed a bit painful for him. Now he's back to the Croods. I think PT is supposed to come by around 3. Likely time for a nap soon.

Ate some food

While mama is sleeping, I thought I'd give an update. O boy ate some jello and chicken broth - seemed to enjoy eating the jello especially. It has stayed down for a half hour, so that's good (seems like it probably won't come back up). His temperature has been running a bit high, which I think is why he seems a little less comfortable right now (wiggling around). He's asked about specific tubes and wires and bandages on his body - what's this one? Why is this on me? He's now watching the Croods after having a break from movies for a while. 

Times

small boy was on bypass for just under 3 hours, cross clamped for 2.

Mama has gotten maybe that much sleep since 4:30 am yesterday.

Big sister and the great grand aunt are watching Despicable Me with small boy... It is about 2 hours long, also.

Even if big sister and the great grant left right now, she would get to attend less than 2 hours if school.  We're going to let big sister just skip school for today.  She can write a blog post or do some Moby Max math.

morning update

Small boy's heart rate is down, blood pressure is up and temperature is down.  He is almost to his normal pre-surgery ranges. 

Last night was fairly uneventful.  He spiked a fever, but it has since come down.  His fluid balance is being carefully managed.  He got a couple of doses of diuretic to pull fluids off and quite a bit of fluids (with albumin).  He was in and out of consciousness due to the sedative used to keep him calm.

Around 11 pm,  he asked for a movie.
Around 1 am, he was finally awake enough to realize that Home and Garden TV was not an acceptable movie, so I put on Teenage Mutant Ninja Turtles.
Around 1:15 am, he asked for his waterbottle (it has Teenage Mutant Ninja Turtles on it).
Around 2:30 am, he was finally allowed to have a few ice chips.
Around 3:30 am, he got really upset because he wanted all of the stickers off of him--I covered him with blankie.
Around 8:00 am, he had his left atrial line removed.
At 10:00 am, the staff rounded.  They agree that he looks good.  They took him off his backup external pacemaker, and are going to discontinue the afterload reducer (milrinone) and the sedative (dex......), remove the Foley catheter, and allow him to drink clear liquids.  

Monday, May 19, 2014

stable

Small boy is in the ICU.  He has his very own nurse for the night.  His heart is beating by itself, but he has a pacemaker attached that will kick in if needed.  He's currently only on one afterload reducer/ionotropic drug to reduce the work of his heart and one sedative.  They gave him an epidural shot of morphine before surgery that is still helping with pain control.  The anesthesiologist on duty just stopped by and mentioned that it will probably wear off around 3 am at which point small boy will either fall entirely asleep or be really unhappy.  

He's still pretty groggy, but is awake enough to whimper that he is thirsty, to tell mom she's being to loud, and to look over and reach for his sister, when he heard her voice.

Ran into the surgeon...

...on our way out.  He was heading to small boys room.   Small boy is being paced, but he was starting to see some sinus rhythm in the OR so he thinks the pacing will not be permanent.

He had also already talked to small boys cardiologist, who shared my plans for next academic year, and he offered co ngratations.

We have seen the boy

The breathing tube is out.  He is sedated.  Going to get dinner while his team gets him settled in the ICU.  He is being paced.

Post surgical surgeon visit

The surgeon came in smiling.

 He explained that the RV to PA conduit he placed in small boy is adult sized.  This means that there is a good chance that the next time small boy needs work done on this part, it will be able to be done via catheterization, which carries much less risk than open heart surgery.

He also explained how he repaired small boy's truncal valve.  Small boy's truncal valve looks kind of like a circular pizza, cut into three large and one small triangular pieces.  Most people's valves look like pizzas cut into three, equal-sized triangular pieces.  In addition to having an odd number and size distribution of pieces (these are called leaflets), the points (apices) of small boy's leaflets were extra thick (called excrescences) and two of the leaflets were partially stuck together at the edge.  Imagine a pizza with toppings piled high in the middle, cut into four unequally sized pieces, with one of the cuts not quite making it through the crust.   This makes it harder for the leaflets to open and close properly--and contributed to the leakiness (insufficiency) of this valve.

To help small boy's valve work better, the surgeon removed all of the extra toppings (shaved down the excrescences), cut through the crust (plicated the commisure), and sewed together some of the extra tissue to make the entire valve smaller (sorry, my pizza analogy broke down!).  The surgeon thinks this repair will be very durable (I didn't press him on what that means) and indicated that it has reduced the leakiness of this valve to the trivial-to-mild range.  Small boy has never before had trivial insufficiency!

The upshot: His heart now works better than it has ever worked before.

The surgical team is placing the final stitches in the skin of small boy's chest.  Then, they plan to try to remove the breathing tube before moving him to the PCICU.

Papa and I will get to see him en route.

The surgeon didn't mention small boy's electrical conduction system...I'll have to ask if he is being externally paced when we see him.

Update

Small boy is warmed up and off the bypass machine.  Both the RV to PA conduit and the aortic repair are functioning well based on the echocardiogram they did.  The aorta has some mild insufficiency (leakiness), but the surgeon feels that it is good enough.  Next, the surgical team will control any bleeding and close up small boy's chest.  It may take some time to control the bleeding due to the scarring from his previous surgery.

Papa and I should be able to say a quick hello as small boy is wheeled to the ICU in about an hour and a half.

Special Update

Hi! big sister is here and she says hi how do you do I do not want small boy to get hurt or sick and if I  could change one thing in the past It would be small boy getting better so he does not have to go to the hospital or get surgery any more.

Updates

The surgeon is still working on the pulmonary end of the RV to PA conduit.  He was able to place a 22 mm conduit, but has to do some patching to reconnect the pulmonary arteries.

They hope to begin rewarming soon, so they can do an echocardiogram to determine whether the repairs are functioning as intended.  Right now, small boy's heart is "asleep."  He's been given medication to ensure it does not contract while the surgeon is working.

In other news, we just got a call from the Ronald McDonald House.  A room opened up, so we have a place to sleep tonight.

Update

The surgeon repaired small boy's truncal valve (the homegrown valve that he has in the aortic position--it controls the flow of blood to his body) and is placing his new RV to PA conduit (the tube that takes blood to his lungs).

The nurse who gave us the update was cautiously optimistic that the repair to the aorta would be good enough.  However, she reminded us that they will test this valve after they take small boy off of the heart lung machine.  If it does not look like it is functioning adequately, they'll put him back on bypass and place a mechanical valve before they close him up.

We are cautiously hopeful about this turn of events.  When we met with the surgeon earlier, he expressed reservations about doing a repair instead of simply placing a mechanical valve.  There are many pros and cons for both options....For me, the biggest con for a mechanical valve is the need for a lifetime of Coumadin (The idea of parenting a super active 5-year old on blood thinners is a bit daunting).  The biggest con of the repair is that it pretty much guarantees small boy another open heart procedure to place an adult sized mechanical valve when he gets older/bigger.

Updates

Little boy is on bypass.  As expected, there was a lot of scar tissue from his last surgery.
Big sister is en route.  She should arrive in two hours.
We are on the wait list for the Ronald McDonald House.

No updates: nervous

We had a nice breakfast, walked by the river and sat in the sun.
Now, we're back in the waiting room.

Met with surgeon...

Small boy is sedated and having his transesophageal echocardiogram.
Once he's done with that, they'll start the surgery.
The nurse will call us once Oliver is on bypass.
We are going to get breakfast.

Parents in the waiting room

After visits from:
Pre-op nurse who put name tags on Sarah (the penguin) and blankie and gave little boy Versed
CV surgery PA
Anesthesia Fellow
Anesthesiologist
and the CV surgery nurse, who wheeled little boy away after he was really relaxed

We have to wait here until the surgeon and another CV surgery nurse come to talk to us before they start the procedure.....

....then, it's off to go hiking, because, let's face it, 7 hours in a waiting room is a very bad idea!

Sunday, May 18, 2014

What will be done tomorrow?

Turnip will be mildly sedated, taken back to the OR, have IVs placed (3-4 probably), be intubated, have a catheter placed, and have anesthesia administered.

His chest will be marked to show the location of his previous scars, nipples, and belly button.

He will be draped with cloths to show only the surgical site, opened up, and placed on the heart-lung bypass machine. His body temperature will be lowered.  (I'm not sure about the order of the last three events).

The surgical team will remove and replace the RV to PA homograft (pulmonary artery) he has outgrown and determine how best to treat his aorta and homegrown truncal valve.  Depending on what they see, they will either attempt to temporarily repair the aorta or they will place a mechanical valve.

Once the repairs are completed, they will spend some time watching to see how his heart is working before closing him up, warming him, and gradually weaning him off of bypass (again, I may have the order of some events confused).

As they close his chest, they will leave behind electrical pacing wires in case his heart needs a little extra help beating.  To help his breastbone heal, they will tie the two halves together with metal wire.  They will also insert some drainage tubes in his chest.

At this point, they will transfer him to the PCICU.  We will be allowed to see him during transfer and then again after they stabilize him in his new room.  

During the next hours to days, he will lose the respirator, Foley catheter, drainage tubes and IVs.  Before he is discharged he will have his pacing wires removed.  

By the time he comes home, he should be down to Tylenol for pain management.  He will also likely be on other medicines to reduce the workload on his heart and, if he gets a mechanical valve, he will be on a drug to prevent blood clots.

When he is discharged, he will need to avoid  people (germs) for a couple of weeks, and will need to avoid bumps and bangs for a month and a half.

This is a description of the expected course of events.  Various complications are possible and planned for.  These include bleeding, nerve damage (phrenic nerve (breathing) or recurrent laryngeal nerve (speaking)), damage to the electrical conduction system of the heart, air embolism or thromboembolism...and others that are less likely.

Sunday--Monday schedule

Go hiking with friends in morning 
Hand sanitizer when we get in car
Play outside with neighbors in afternoon
Hand sanitizer when we come inside
Bath in evening
Three minute scrub down with special washcloths after bath
Clean PJs, clean bed sheets, clean stuffed animals, clean blankie
NPO after midnight except clear liquids.
In car by 5:15 a.m.
No clear liquids after 5:30 a.m.

Friday, May 16, 2014

Pre Op Sum Up

Cleared for surgery. 

Pre Op Appointment

Anesthesia exam and visit--check
Surgery exam and visit (including detailed surgical description, risks assessment, consent forms) -- check (dad signed, mom left the room)
Echo -- now (Turnip is watching Frozen)
EKG--next
X-ray -- after that
Blood work --final stop

Tuesday, May 13, 2014

Anticipation

How are we doing, you may wonder.

The kids and their dad seem remarkably nonplussed.  I, on the other hand, am another matter entirely.  Two examples:

1) Last week, after driving the kids home from gymnastics, I parked the car in our garage and had the kids help shuttle all of our stuff into the house.  Two minutes later, Turnip came to find me. 

"Mama, our car is across the street," he said.

Indeed, I had forgotten to set the parking brake on our manual transmission and so, in neutral, our car rolled out of the garage, down our driveway, across the street and up into our neighbor's yard.  

2) Just this morning, I sent my daughter scampering out to catch the bus--an hour early!


Tuesday, April 8, 2014

how and when we chose to tell Turnip

Since October, I've been trying to figure out how to tell my son about his upcoming operation.  Most resources I've found have suggested not telling a child until the operation in immanent.  So, for a one year old, you'd tell them the day before, for a two year old, two days before, etc....  The rationale was that telling them earlier simply allows them to worry....and the children don't have the memory or mental capacity to prepare for something months down the road.  While I can see the value in this strategy and I use it sometimes, I have chosen a different option when addressing this surgery.

We have always been open with our son about his heart.  He has a baby album just like his sister does.  Only his album shows him in the NICU, prepped for surgery, post-surgery with his chest propped open and wires and tubes sprouting off of his body.  He has seen himself intubated, with drainage tubes and with an oxygen cannula.  In those photos, his is rarely alone.  He is usually being held or caressed by someone who loves him.   Our son knows that he has had surgery and he knows that he will have more.  That is simply part of his life. 

We have told him that his body did not grow a blue tube when he was growing inside of me.  We have explained to him that when he was a baby, the doctors gave him a baby-sized blue tube, but that as he grows they doctors will have to give him a big-boy part to help his heart work. 

A few months ago, discouraged by winter, my son told me that he wants to sign up for soccer again this summer.  In that moment, I had to decide: do I lie to him and tell him that he can play soccer this summer or do I tell him that he will be recovering from surgery and so will not be able to play soccer?  I chose to tell him the truth.  Even though he was initially angry (what kid would be happy to hear that they will get to be poked and prodded instead of playing soccer?), I am glad I did.

During the past few months, my son has brought up the subject on several occasions.  We have been able to address his fears and explain what will happen.  We've been able to explain to him that, no, he won't be getting intramuscular injections (he just got his tetanus shot), but he will be getting IVs.  I've been able to remind him of his last blood draw--how it hurt a bit when the needle went in, but then just felt kind of funny--and let him know that that is what the IVs will feel like.   I've been able to compare an IV to his father's insulin infusion set.  We've been able to talk about what he will take to the hospital and who will be there with him. We've explained that he will be asleep when the surgery happens and that the doctors will give him medicine so his body won't hurt.  We've assured him that we will be there when he wakes up.

By telling him early, we have allowed him to process the information and address his fears in a relaxed manner.  He has gotten through his initial resistance and now is treating his surgery as just something that will be happening.  With his projected in hospital stay (10 days) and in-home recovery (6-8 weeks), this surgery will have a major impact on our family's schedule.  Now we can talk about our schedule and introduce fun things that we can do during that time. 

Monday, April 7, 2014

my mask



A month ago, I realized that I am emotionally topped out.  My ability to calmly respond to the minor upsets in life has been dramatically reduced and my memory is shot.  My husband describes it by saying that I have a reduced emotional buffer zone.  When things in life go well, I have lots of energy left over to devote to non-essentials, like maintaining strained relationships, finding charitable interpretations for unkind behavior, or carefully monitoring my words and actions to conform to the norms of whatever group I am with, etc ….  Right now, my son’s upcoming surgery and other major changes in my life and my family have drawn down my emotional reserves:  I no longer have enough emotional energy to maintain a normal family life and do all of those other things as well.  

I no longer have the energy to maintain the mask I have worn in public all of my life.  I can either care for myself and my family or I can put on a show for the people around me.  I cannot do both.  It is both liberating and terrifying to leave the house every day as me, to not try to figure out how people will respond to me and hide those parts that may be confusing or disturbing or offensive to others, but rather to simply be myself.   

I am reminded of Paul Laurence Dunbar’s poem, “We Wear The Mask”

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes,—
This debt we pay to human guile;
With torn and bleeding hearts we smile,
And mouth with myriad subtleties.

Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
       We wear the mask.

We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
       We wear the mask!

Changes in my life have shattered my mask:  there are irreparable cracks on its surface.  For a few months, I tried desperately to hold the pieces to my face, to continue to act my part.  Finally, I have realized that I only have two hands.  I can either hold up my mask or I can hold onto the things that matter most to me.  I cannot do both.