A Broken Heart

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)
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)
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)

Thursday, February 9, 2017

Tippy toppy

On Monday night, small boy snuggled up next to me and asked, "what does it mean if the back of my head hurts and then I feel tippy toppy?"   When I asked him to tell me more he couldn't.

Wednesday night, when I was tucking him in bed, he clarified, "when I said I feel tippy toppy, I mean I feel like I'm floating away. "

"Did that happen to you again? "I asked.

"Yes when I was playing Wii."

"Was your babysitter with you? "

"No, I was at school. "

"You were playing Wii at school? "

"No, [ my babysitter ]  was with me when I was playing Wii. Not when it happened at school. "

"What do you do when it happens?"

"I just sit there. "

"What made you think of it just now? Is it happening now? "

"Yes, but my head didn't hurt."

I noted that his heart rate had flipped from the 80s to the 40s or 50s while we were sitting in bed.

I called the cardiologist at the hospital, who wasn't super concerned. The cardiologist indicated that it was probably either his heart rate readjusting as the amiodarone leaves his system or we might have him on too much blood pressure medication  now that his heart doesn't have to work as hard.

A few minutes later, I went back to his bedroom and his heart was doing a dance. 40 beats a minute, 80 bpm, bigeminy, 40 beats a minute.  And through it all, he was sleeping and breathing peacefully. I wish I wasn't able to hear his heart valve from across the room.

We have an appointment with the cardiologist who specializes in heart rhythms coming up on Valentine's Day. Hopefully we can figure this out then.   Until then, Cardiology does not seem to be concerned.

Their lack of concern is probably related to the fact that otherwise small boy is doing remarkably well:. Running around with friends, playing at recess, and having a great time.

Monday, January 30, 2017

Continuing to do well...

O boy is enjoying being back at school. Today is the first day that he went for the full day. Energy seemed fine, and he seemed engaged. A friend of his gave him a big hug at lunch and said she'd missed him so much. He got a silly grin on his face and turned bright red. I was amused!

Last Friday we took him in for an INR check - see how the blood thinners are working. We've been doing that at a local clinic, that isn't part of our insurance, that does it by finger stick instead of a full blood draw - don't need to torture him more than necessary! The result came back at 3.0, which is on the high end of the desired range. After some disagreement, the docs decided it was fine. We decided to feed him some kale (which we would've done anyway, but we did note the Vit K in kale limits the effectiveness of the blood thinners).

Next appt is Friday, we'll see what the doc says. We're supposed to decide the next phase of activity restrictions at the appointment, as the surgery recovery limitations will be going away, and we'll need to more thoroughly consider limitations (or lack thereof) due to blood thinners.

Tuesday, January 24, 2017

Back to School Today!

Today he went back to school for 2 hours to see how things would go - things seemed good. He wondered why he couldn't stay all day. I think we'll stay a little longer tomorrow (I'm staying at school with him for now to ensure things go okay). I had conversations with the district health coordinator, the school nurse, the principal, and the teacher. They want a note from the doctor to say he's okay to go back and detailing limitations...

Monday, January 23, 2017

Chill weekend

Lots of Netflix.
Walked to an open house around the corner.
He's frustrated at his activity restrictions and general deconditioning--but getting stronger every day.
Big sister had a nasty cold over the weekend and was quarantined in her room...but still managed to share with mama.

Friday, January 20, 2017

Follow up visit #1

Things are looking good. Small boy is recovering well at home.

1. Small boy's chest is healing well. He's now allowed to take a bath, reach above his head, and wipe his own behind.
2. Small boy's lungs are doing better. He's not breathing so rapidly and his chest x-ray looks clear.
3. Blood pressure is normal: 100/60
4. His liver has gotten smaller (now only 4 cm below his ribs), the level of liver proteins in his blood is normal, and his weight has been stable. In conjunction with his improved findings, this means he can stop taking his diuretic.
5. His heart rate is still fairly low for a kid his age, but it gets higher when he's active and he has no symptoms.
6. His INR  (used to measure how much his blood is being thinned) continues to be at the right level. This means he doesn't need to get another blood draw to check it for a whole week.
7. He can return to school for part of the day starting next week if he and Papa feel up to it.

Next appointment: two weeks.

Tuesday, January 17, 2017

Quiet day with papa

Mama's back at work.
INR testing done by finger prick as an outpatient.  We'll have to pay for it as we went out of network to avoid a venipuncture.  $59.00 per test.
Stayed awake till 8:15 tonight...not as tired as yesterday.
Down another .5 pounds.  Starting to look a bit skeletal.
Small boy pointed out today that his chest is healing in an unusual shape.

Monday, January 16, 2017

Fast asleep...

...in his own bed.

And I have been checking on him every 15 minutes....

Phase two...


Sunday, January 15, 2017


Today small boy had another echo: I heard third hand that it looked "good" and there was no fluid around the heart.  However he does have lots of blood backed up in his vena cava.  It is unclear why.

He hasn't spiked any real fevers, but his temp did go up a bit this afternoon, and then came back down again on its own.  It is unclear why.

His blood pressure has been running quite high for the past two days.  It is unclear why.  It is hoped that the lasix and his new, increased dose of enalapril will help with that.

He is getting extra lasix this evening because he didn't pee enough today.  It is unclear why.

No naps today, and he looked beat this evening at dinner.

Good: his day nurse made his IV start working for blood draws again, so he does not have to get a poke in the


Good:  slept well.  Woke up, hoped out of bed, and walked to the fridge to get some yogurt. Coughing less. Morning X-ray is less wet.  His weight is down a kilo overnight after his diuretic (pee medicine) worked its magic).  His warfarin is in the proper range, so we stopped the lovenox.  No fevers after 6 pm.  He ate a good breakfast.  He is cheerful and looking forward to the day with his papa. I'm looking forward to some sleep.

Otherwise: still coughing.  X-ray is still wet.  Low grade temperature increase (38.3 C) around dinnertime last night.  Heat rate is really slow ( upper 30s to upper 50s while sleeping,  but up to the mid-70s during the day ).

TEE from a few days ago: the mechanical valve looks good. The areas that the doctors were worried about appeared to be normal. The  suspected leak around his new valve looks like it is a hole between the two bottom chambers of his heart instead. This is good because VSD's (holes between the two bottom chambers of the heart) do not destroy blood cells, while perivalvar leaks do.  Small boy did have a VSD remaining after his first surgery. This may be that same hole.

Liver ultrasound: small boys liver  and spleen or both full of fluid (Hepatosplenomegaly).  There are also additional collections of fluid in his abdomen (ascites) and his lungs (small bilateral pleural effusions).  The Lasix should help with this.

INR: 2.1

Saturday, January 14, 2017


Good news:  enjoyed his shower and another long walk.  Ate a huge dinner and wanted desert later.  Enjoyed playing magic with friends. Coughing less. 

Troubling news: having a hard time regulating his temperature (super cold hands, arms, legs, and feet at times), more fevers, very enlarged liver (8 cm).

Plan: 1. IV Lasix in case the liver enlargement is just fluid overload (lots of evidence points to this: his weight is up substantially, his lungs look wet on X-ray, he had more fluid in than out yesterday, he didn't pee as much yesterday as he did on previous days).  2. liver ultrasound to make sure there isn't a clot in his liver blocking blood flow. 

He slept through most of the ultrasound and IV Lasix.  Sleeping comfortably now. 


More coughing overnight, still pale, still breathing fast, up 2 kilos this morning, not quite therapeutic on the lovenox, looks better than yesterday, took a long walk with papa to go get some doughnuts.

X-ray shows his lungs looking a little more fluffy than they did before (he's holding onto fluid), which might partially explain the coughing and fast breathing and weight.  So, he's restarting the furosemide (a diuretic) to help him pee some of the extra fluid out.

Dose of lovenox is being increased to get him therapeutic.

Dose of Coumadin will be decreased to 5 tonight (6 yesterday) and 4 tomorrow to try to get him back in therapeutic range so we can stop the lovenox (lovenox is a fast acting blood thinner that is used as a temporary fix while the dose of Coumadin is getting adjusted. As soon as the Coumadin is where it should be, we'll be able to stop the livenox).

He ate some bananas with peanut butter, got all sorts of adhesive off of his chest, and is now napping.

Friday, January 13, 2017

Fever 101.3

Subdued this morning

But, he did eat a waffle for breakfast and keep it down.
He got the bandages removed from both catheter insertion sites.
He agreed to wear underwear even though he was worried it would hurt the places where the femoral catheters were inserted (yay for boxers!).
He sat up to play Farkle with PT--and it didn't hurt as much as he thought it might.

He is not currently in atrial flutter.  However, the main pacemaker for his heart (SA node) is s little sleepy.  Overnight his backup pacemaker (AV node) was running the show.  During the night some things got a little wonky.

The heart's back up pacemaker only controls the bottom half of the heart. Overnight Small boy's back up pacemaker would send a signal for the bottom half of his heart to contract, and it would. However, at the same time, the signal would travel backwards, and  trigger the top half of his heart to contract a few milliseconds later.   After contracting, the top half of his heart would send that signal right back to the bottom half of his heart which would contract again, very quickly. So, he would have two heartbeats really close together and then a pause and then two more heart beats really close together and then pause (junctional escape rhythm with atrial bigemimy).  Over the course of the night, his regular pacemaker woke up a little bit, and now he's having mostly normal heartbeats.

Now that his procedure is done, the next step is working on resending his blood to keep it safe for his new robot heart valve. He's  been on heparin since last night and is starting his Coumadin today.

He looks completely wiped out, and is holding his entire body very carefully. I hope after he eats some more, he'll start to look and feel better.

And now it's time for me to sleep.

Thursday, January 12, 2017

New funk

Plus a little puke-y

Now sleeping

Back in his room...

...watching Kung Fu Panda 2 while  perfectly flat for the next five hours.   The electrophysiology doctor is fairly certain he got the pathway. However there still a 20% chance that small boy will develop flutter again in the next six months. If that happens, we have to start all over and figure out what to do about it.

His heart rate is slow for a child his age, but not much slower than his heart rate was before the surgery. There's some thought that I t's a little bit slower than it was because he still has some of the amiodarone on board. Amiodarone stays in the body for a long time. His heart rate should gradually recover over the course of the next month or so.

The electrophysiologist is comfortable with small boy going home tomorrow. However, the other cardiologists may want him to stay in the ICU for a while longer while they adjust his warfarin dose.

We will follow up with the electrophysiologist when small boy goes in to see his regular cardiologist for a check up.  For now he is on no drugs to control his heart rhythm.

Done with ablation, but...

...he still has a really slow heart rate.  They're deciding whether to treat with medication or whether to leave the catheter in, in case they need to pace him.

They got everything else done: the trans-esophageal echo, chest tube sutures out and new IV in.

He should be back to the PICU in the next hour.


...appears to be gone. Right now they're running tests to confirm that it's gone.  They want to make sure that it won't come back. It appears that the extra pathway went right over the incision site.

 Small boys heart is beating again. However, it's beating rather slow. They're giving him medication to help speed up his heart rate. They're also pacing him. The thought is that as he comes out of anesthesia his heart rate will pick back up again. Here's to hoping they're right.

It will still be a while before we see him. They still need to do his transesophageal echo, remove his chest tube sutures, and place a new peripheral IV while he's asleep.

Fortunately, Papa came back to the hospital. I think this is the first time in three weeks that we've spent time together. It's nice.

A few more hours yet

They are just now starting in the ablation.  It took a while to find the targets.


...the procedure.  Right now, the team is mapping out electrical pathways in small boy's heart.


The boy is in the EP lab


...for small boy's turn in the electrophysiology lab.  The first case of the day is taking a bit longer than anticipated.

So far, small boy has giggled at papa's solo dance party, finished "Frindle," tricked his medical staff with fart putty, helped mama practice tying suture knots,and is now playing WiiU.

Around 10:30, he was delighted to tell me we had missed breakfast.  I guess we've been pushing the food pretty hard.

He is still afebrile and still in flutter, although his beta blocker (esmolol) is keeping his heart rate within tolerable limits. The docs will come up with a new plan for him after he is done in the EP lab.

Wednesday, January 11, 2017

Post operative day 15 plan

1. Pain: there has been none for days.
2. Blood pressure: under control.  Stopped isradipine.  Currently on enalapril.
3. Heart rate & rhythm: He is still in atrial flutter, but at a slower rate (90-100 while sleeping, 120-140 while awake).  On Esmolol.  He will have an electrophysiology study and possible ablation performed tomorrow.
4. Fevers.  None since 1/8/17.  On colchicine to reduce inflammation and furosemide to reduce fluid retention possibly associated with post pericardiotomy syndrome.  All blood, urine, and nasal cultures have come back negative so far.  Transthoracic echo (TTE) is hard to read because he has so much scar tissue from all of his surgeries.  He will have a transesophageal echo (TEE) tomorrow along with his electrophysiology study to confirm there are no growths.
5. Wound healing: His incision is healing well -- all dressings and sutures are removed.  His chest tube sites are also healing well.  The chest tube sutures will be removed while he is under anesthesia for his electrophysiology study tomorrow.  He asked to be out when they are taken out.  I am so glad he is learning to advocate for himself.
6. Anticoagulation: will be held for his electrophysiology study tomorrow. We don't want any bleeding during the study.  He will start back on warfarin afterwards.  For now he is on IV enoxaparin (No one knew this was a thing, but the pharmacists figured it out when we all pushed back against twice daily shots).
7. Personality: he is intermittently disconnecting his oxygen monitor and EKG leads to mess with peoples heads.  He has also started dragging his IV pole around his room so he can play soccer or sit on the couch.  He likes to chat with his surgeon.  Yesterday he read 2/3 of the book Frindle, played multiple rounds of Sushi Go with mama, enjoyed unwrapping and playing with a finger flashlight and polar express bell that a friend sent him last night, and had fun playing WiiU.
8. Nutrition: He woke up at 4 am hungry....so I fed him (a yogurt, PBnJ sandwich, and Naked green juice).  And then he ate breakfast at 8 (2 sausage links and 1/2 a bowl of Cheerios with milk).  He's back up to 21 kilos today.

Tuesday, January 10, 2017

No news...

1. Still has a funky heart rhythm-- switched from amiodarone to esmolol to control rate, plan for ablation on Thursday.  There was talk of doing a cardioversion today (shocking the heart back into a normal rhythm), but as he has gone in and out of atrial flutter and has tolerated it well, this was thought to be futile.
2. No fevers today.  Got his (hopefully) final blood culture drawn.  Nothing has grown on any culture.  The viral panel came back negative, so now he is out of isolation (meaning we no longer have to wear beautiful yellow gowns and masks while in his room).

Monday, January 9, 2017


1. Fevers: *The Infectious Disease doctors want to get 3 cultures, 24 hours apart, while he is off antibiotics.  He got his first blood culture drawn last night right after his fever spiked.  He'll have another today and a third tomorrow. *The nasal swab that he had done may take a while to come back.
2. Arrhythmia:  Cardiology wants to take him to the electrophysiology lab on Thursday to ablate (stop) the extra pathway that's making his heart flutter
3. Eating:  papa says small boy ate well today (today was my day to sleep).
4. Showering: was scary, but small boy's favorite nurse made it fun and helped him get all cleaned off.

Journey continues...

Well, they still don't know what's causing the high temperatures. The Infectious Disease group came in today, but they didn't seem to have any great insights - more cultures planned (already had 3 or 4). And, they're also not sure what to do with the atrial flutter. It's been going since last night - not stopping yet. An HR of 145 for 16+ hours is quite a while... They're thinking ablation, but that's not definite yet.

Today he played room soccer with me for about 15 minutes, played Wii, went on a long walk including some stairs, had some guests join us for the walk (who also played some Pokemon Go with us!), played Sushi Go (new game from the kind guests). Now he's playing a Pokemon Battle electronic board game with OT.

Sunday, January 8, 2017

Temp broke

By 10 pm.
Got blood cultures again (#3)
Now, quietly sleeping, not coughing, heart still in flutter but rate decreasing.

Temp = 103

Mellow day...until now

1. Heart rhythm has been stable.
2. Played more Forbidden Island with big sis and mama this morning.
3. Played tanks and walked with Rachel this morning.
4. Got a little temp in the afternoon that came down with Tylenol...
...but coupled with his cough, fast breathing, and eyes hurting, he earned a chest X-ray.  Because the chest X-ray looked good, he earned a nasal swab, and blood gas. The blood gas showed that he was breathing fast (respiratory alkalosis), but didn't show a reason why.  Now he's in isolation pending the results of his nasal swab.
5. Played the piano for his nurse,
6. Played soccer with mama after his walk,
7. Played Magic with big sis
8. In bed watching Despicable Me at 8:30 when flutter came back.  He can't tell, except his tummy feels funny.

Boring night...

INR (warfarin) still in range .
Temp has been normal since the one high reading at 6 pm last night.
No new rhythm issues.  The cardiologist on service checked:  small boy had heart rates in the 60s while awake and in the 40s while asleep even before surgery.
CT surgery is planning to come take his bandages and steri strips off some time today (They already tried twice, but he was busy both times--once with a visitor).
He's wearing his own clothes today.

Saturday, January 7, 2017


At 101.8 at 6 pm by mouth, 99.4 by armpit.

Hot chocolate...

Small boy had his temperature taken around 4:30 and it was up: 100.2.  "But," I told the nurse, "he just finished his hot chocolate 10 minutes ago."  So, she waited 30 minutes and took it again: 98.8.  Those were an anxiety filled 30 minutes.

Mellow day

1. Small boy has already taken two walks (with papa) and a shower (with mama).  He really liked the detachable shower head.
2. We've read a couple of "who would win" books and played a game of Forbidden Island.
3. Small boy's principal came to visit and played a Wii tank game with him.
4. His heart rate has been holding steady.  We were reminded today that he had some low heart rates before surgery (that's what they found on his most recent Holter test)...and he's been mostly comfortable, with the exception of one hour this morning when he had some GI upset and two loose poops.
5. I'm cold...so he drank a cup of hot chocolate.  😜
6. The docs stopped his antibiotics and started an anti inflammatory (colchicine) as he has not grown anything from his blood or urine cultures.  They're thinking maybe his fevers are post pericardiotomy syndrome.


(That means slow heart rate) since 5:30 this morning.  Instead of cycling super fast, his atria aren't working at all...and his ventricular rhythm is slow.

Friday, January 6, 2017


out of atrial flutter.  Now if he can only stay there.

Best indication...

...that today was a good day: small boy asked for a before bedtime snack.

He also ate all of his dinner, took three walks, and is joking around with his parents and nurses.

He currently does not have a fever...and seems to be sporadically working his way out of flutter (he received more IV amiodarone at 4 pm).

Better and better

Small boy -looks- so much better to me today.
1. He took a long walk to the adult hospital...and grinned and grinned while he rode back in his wheelchair.
2. We had to make him stop playing Wii sports because he was getting too enthusiastic--now he's playing some Mario Brothers game.
3. He's wearing pants!
4. He just ate a whole bowl of salmon pasta, 1/2 an apple, and 3/4 of a cliff bar (thanks, friends!).  We cheated a little on the pasta and apple--I fed him while he played Wii.
5. His BM was a log instead of brownie batter.

Goals for going home

1. 48 hours without flutter
2. 72 hours without fever, last fever around midnight.
3. Negative cultures

...but, after a long walk this morning, he flipped back into flutter around 11 am.  He has till 2 pm to flip out of it on his own.  He enjoyed his walk and is now happily playing Wii.

In other news, his INR is in range, so he got to stop heparin again.

Thursday, January 5, 2017

Good things

Kind teacher brought fun books
IV amiodarone started around 5:30, finished at 6.
Flutter stopped at 6.
The cardiologist on service kindly talked me down from my anxiety (which is not surprising... everyone on small boy's care team has been fabulous).
Femoral line out at 6:40. Required lots of coaching from mom to, "smell the cookies, blow out the candles."
Happily watching Despicable Me while lying completely flat and completely still.
Papa headed home to get some shirts and sweats: with the Line in his leg gone, he can graduate back to real clothes.

I dreamt about crying

when I went home to nap today.


1. Fever gone since 3ish...but, it earned him new cultures and continued antibiotics...
2. Atrial flutter returned around 2.  They're giving him a few hours to try to flip out of it on his own before giving him anything
3. Small boy mixed the idea of lovenox, so he just got a new IV to keep the heparin going.
4. He looks better now than this morning.

Backtrack today...

Today he's not feeling so well. He was lightheaded this morning when a walk was attempted and had an upset stomach. Now he's got a fever again, 103. They're not sure what's going on...


Small boy slept well last night.

1. Chest tubes: he is needing less pain medication now that these are out.  His x-ray this morning did not show any accumulation of fluid around his lungs or heart.
2. Fevers:  he has not had a fever for 36 hours. No germs have grown out of any of his cultures.  If he makes it to 48 hours, the antibiotics (zosyn & vanco) will be turned off and his femoral line will be removed.
3. Heart rhythm: no new episodes of atrial flutter. Sunday morning will be his 10th dose of amiodarone. After that he will decrease his dose to 100 mg once a day.
4. Anticoagulation: INR was 1.4, anti Xa was 0.28 so both warfarin and heparin were increased. There is talk of starting him on lovenox (which is given by injections under the skin, like insulin) instead of heparin (which runs through snnIV) that we can take him home while we continue to work to get his warfarin levels (INR) where they need to be.
5. Bloody noses: he had another tiny one this morning.  Again, I'm not sure why (dry air, heparin).
6. Off:  he's just off this morning.  He's already had two bowel movements, his tummy hurts, his legs hurt, and he feels light headed when he tries to walk.  He also feels hot to the touch although he does not register as having a fever.  I think part of it could be the antibiotics wiping out his normal intestinal flora.
7. Blood pressure: holding in the 110s/60s.
8. Repair: he's getting another echo as I type.

Wednesday, January 4, 2017

Much better with the chest tubes out

So, with the chest tubes out, O boy is much happier and willing to move around. He's much more talkative, and I haven't noticed the usual indicators of pain (he always says he's doing good or fine, so that's not a good indicator). He's been on two walks at a much quicker pace than usual - wanting to play Pokemon Go each time (which we did a bit). This afternoon he also had a special guest, Robin, come visit. He beat her in Farkle, which he was very happy about! We also played Jenga and spent a long time constructing things with the blocks. After being in a chair or on walks throughout the afternoon, now he's sitting back in bed awaiting Culver's for dinner!


Chest tubes are out.  The worst part: coming out of sedation.   He saw three of his nurse.  He also saw angry aliens.  After he was totally awake, I told him that his chest tubes were gone.  He lifted his gown to check and then did a little happy dance with his hands and sent a video to his cousin.

POD8 plan

1. Heart rhythm/rate:  stable overnight with no decrease in rate.  Keep amiodarone at 100 mg BID (2x per day)
2. Chest tubes: output was low overnight and chest tubes can get infected or cause fevers, so they will be pulled today.  Small boy will be sedated for this procedure.  He also received another infusion of platelets in preparation to help with any bleeding.
3. Fever:  he hasn't had a fever since 7 pm.  He's been on vancomycin and zosyn since yesterday early afternoon.  He'll only stay on them for 48 hours unless his blood or urine cultures grow out something.  So far they haven't grown anything, so it is unclear what caused the fever.  It could have been infection, or irritation from the chest tubes, or something called post-cardiomyotomy syndrome. I don't know what it is, but apparently it happens about this long after surgery.  The treatment is ibuprofen...which he can't have.
4. Nosebleeds:  he's had three or four in the last 24 hours.  All of them have been microscopic by small boy standards.  The platelets and reduction in his fever should both help with this.  Leaving the super dry air of the hospital will also help.
5. Blood pressure: has been in the100-110/60s on enalapril and isradapine.
6. Pain: seems less every day. Still on scheduled Tylenol.  He's only been needing the oxycodone every 7 hours for the last bit.  He does get s bit yawn-y and grumpy towards the end of that time. I'd like him off oxy as soon as possible.
7. Discharge plans: if everything goes well, we're looking at Saturday or Sunday....but given his course this far, that is a big if.

Tuesday, January 3, 2017

Bloody nose


Earns small boy some cultures: blood and urine.


1. Restarted heparin due to low INR
2. Went back into atrial flutter
3. Got IV amiodarone
4. Came out of atrial flutter
5. Got a tiny nose bleed
6. Paused heparin
7. Happily building his Star Wars Legos and watching the Lion, the Witch, and the Wardrobe now.

His blood pressure stayed the same through all of it, but he got quite a bit sweaty.

Happy boy...

...was smiling when I arrived this morning.
Chest tube output = 250 mL
INR = 1.4

If chest output follows current trends, he should get chest tubes out in the next two days.  Chest tubes are what are keeping us here.

Monday, January 2, 2017

This is big sis posting for the night!

Little bro  is quite content. He worked on a puzzle for a little bit and then ate a dinner-he thought the milkshake was especially yummy. He didn't share but I got a milkshake on the way home. He also took a walk around the unit. He was very happy when he got to watch more movies after the walk, though.😀

Pain, poop, and progress

Right after small boy did his daily duty, a particularly funny part of Big Hero 6 came on.  Small boy laughed, which hurt, so he started crying, which also hurt.  And then his heart was back in normal sinus rhythm (HR 70s-80s w/ the atria working)...it had been in a slow junctional escape rhythm (50s-60s with no help from the atria) since I arrived this morning.

POD6 plan

1. Blood pressure control:  his pressures have been good on enalapril, isradapine, and furosemide.  All medications are now oral.  Today, the docs will adjust the timing of his meds so he only takes them twice a day, with an eye on going home.
2. Heart rhythm control:  amiodarone will be on board for a while to keep his heart rates under control while his heart heals from surgery.  He's no longer in glitter, but he's still in a junctional escape rhythm.
3. Anticoagulation: INR was 1.9 today.  For now, the docs will check his INR every day and adjust his evening dose of warfarin accordingly.
4. Walk
5. Eat!
6. Play games using his arms

What is it like to sleep in the PICU?

According to Papa:

"There were alarms all night long: Syringe empty.  Line occluded.  Heart rate low. Blood pressure high.  Can't find a pespiratory rate because small boy has scratched his sticker off.  And then five minutes later, the nurse would come in with some meds. And then, at 11, we got a new nurse who hadn't worked with small boy before."

Sunday, January 1, 2017

POD5 progress

1. Switch the IV BP medication for a second oral medication.  Done: now on oral enalapril and ezradapine and BP is less than 110/60.  
2. + 3. Morning labs will be drawn tomorrow.  Femoral line will be removed and peripheral IV will be added when his chest tubes are removed, so everything can be done under sedation.
4. Walk 3 x: done: each walk was longer than the last one and he had less pain with each.
5. Poop again: success
6. Eat: not much in the morning, more after his poop.

Hopes for overnight:
1. Good sleep
2. Stable BP
3. Stable HR
4. Chest tube output no more than half of yesterday's (he's on track to do this)
5. INR in range despite amiodarone

From scary to not scary at all to scarier

Earlier this week, I was nervous about small boy being on both warfarin and heparin in the context of his bleeding disorders.  Today he got off of heparin, which eased my worries.

However, when I got back this evening, I spoke with the PICU team this evening, and learned that small boy is now on scheduled amiodarone.  Apparently, this afternoon, his atrial flutter came back because the amiodarone he got a few days ago finally worked its way out of his system.  They gave him adenosine to confirm he was in atrial flutter and then started him on scheduled amiodarone.  The trouble is that, among other things, amiodarone interacts with warfarin.  His dose of warfarin will be reduced tonight as they try to figure out how these two drugs interact in small boy.

I have lots of questions for the cardiology team tomorrow morning.

Last night while we were sleeping...

I love this boy.


Papa texted:

Flutter resolved within 2 hours with some help (adenosine and esmolol).
Just had a massive poop.
He felt find through all of it...except for being worried about pooping.
Just very quickly ate some chicken tiki masala.

Flutters back

POD 5 plan

1. Switch the IV BP medication for a second oral medication.  Total mess: warfarin (alternate 2 and 3mg every evening), Tylenol, oxycodone, enalapril), ezradapine, furosemide
2. Central venous pressure measurements no longer needed.
1. + 2. = 3.  Nothing will be going into IVs.  Only lab draws.  Remove femoral lines?
4. Walk 3 x
5. Poop again (drinking lots of prune juice, water, Gatorade, and miralax)
6. Eat

What we are waiting on to go home: less fluids coming out of his chest tubes (3 1-cm diameter tubes draining the R and L lung spaces and heart space in his chest).  The tubes come out after he is putting out less than 5 ml/kg/day... which means approximately 100 mL/day.  So...we're definitely not going home today and probably not going home tomorrow.

Everything else can be managed as an outpatient.

Good news

1. Warfarin is therapeutic -- heparin was stopped
2. Chest tubes only put out 770 ml yesterday, half of what he put out the day before.
3. mostly slept from 9:30 pm until 8 am