Thursday, April 30, 2015

Fontan Madness

This is going to be a longgg post, so bare with me.  I was too exhausted to update the blog last night, so this morning I will include all of yesterday and this morning.


Owen received an amazing video from Batman yesterday morning that we watched about 10 times before leaving for the hospital.  He of course had to wear his batman costume to the hospital.  We arrived at the hospital around 7:15 and went to the surgical floor of the hospital to get checked in and ready for surgery.  Owen spent most of his time in the playroom and when he wasn't in there, he was very upset and uncomfortable with his surroundings.  Kevin was allowed to take Owen back to the OR and stay with him until he was asleep.

We waited in the PICU family waiting area on the 4th floor while he was in surgery. They finally started operating around 10am.  Before they can operate, they need to place all sorts of access lines in Owen.  They placed an iv in Owen's right hand, an ART(arterial) line in his left hand(but had to move it to his right groin because it failed during surgery), and a central line.  Before they closed Owen, they put in pacer wires(used to pace his heart if needed) and 3 chest tubes. Owen was on bypass for 94 minutes and his surgeon kept him open for a while to let him "dry" out before closing him up.  Post-Fontan, you can have issues with drainage and it can keep you in the hospital for a while.

Once Owen was brought back to his room, we met with Dr. A and his nurse Kate and they said he did amazingly well! He was very stable throughout the whole surgery. Last night he had some issues with his heart rate, so he was given morphine and it helped a lot. He spent a majority of the night asking for water when he would stir.  He's also only been waking up for a couple minutes at a time and then will sleep for a while.


This morning the doctors rounded and decided on doing the following today:
Start Owen on Lasix
Remove his Catheter and his ART line
Start Oral liquids, but restrict them.  He's only allowed about 600ml's of fluid a day plus his meds.
Start with PT/OT
Decrease his Precedex
Get up and moving a little bit

Allowing him liquids has been a great helper, because he can get some much needed relief to his mouth and throat, and also stop asking for water all the time!

The Catheter and ART line were removed around 10 am and PT/OT stopped shortly after that.  Owen must have heard us discussing him sitting up today and he pretty much sat up on his own. (Slowly and grumpily, I might add) He wanted to sit by Kevin so he sat on the edge of the bed next to Owen and Owen pretty much fell asleep sitting up. It's a lot of hard work! When asked if he wanted to sit in the chair with Kevin, he said yes, but as soon as the blanket was pulled of his lap he refused.  We were able to get him back into a laying position and he took a nap for a while.  He woke up begging for Kevin and then tried sitting up/rolling onto his tummy by himself to try to get to him.  We were able to move Owen enough for Kevin to lay next to him in bed for a little bit.

We went for lunch around 12:45 and Owen ended up taking a 2 hour nap! Since morning rounds his Dex has been cut in half and his lasix dose has been doubled.  He played his tablet for about 5 minutes and is now napping contently again.  There's a very high chance Kevin and I will end up sleeping at home tonight.  He's still pretty out of it.
On the way to the hospital

Nananana BATMAN!

Throwing a fit in pre-op

Holding Baby Selah's hand

Baby Selah spent the morning with us! 

Owen's med tree

Renal(kidney) function monitor. 

Mr. Frog got to dress up as Batman and assist.

Stats: top-heart rate, red-blood pressure
blue-pulse ox, white- respiratory rate

PINK TOES!!! (They've NEVER been pink)


Chest tube collection drains

Owen was a guinea pig for a new surgical product.
It is supposed to help with pressure sores. 

Blue 99 is his pulse ox. It's never been this high!

We were able to give him wet swabs to try to
satiate his want for water.

He refused to give up the swab and fell
asleep with it in his mouth.

Sitting up during PT.

Passed Out.

I can get dressed! 

Monday, April 27, 2015

Fontan Pre-Op Day

Well, I suppose, it's time to get back into the blogging game to keep all of you wonderful prayer/good vibe warriors informed! I'm doing something a little different this time.  I've decided to do a "Day in the life of a heart warrior" post.

We spent the day at American Family Children's hospital for Owen's pre-op appointments and let me tell you, we didn't have a dull moment!

When we arrived, we started by visiting the Learning center where we went over all of the pre-op information(stopping meds, stopping food and drink before surgery, etc.) This was pretty boring, so I have no pictures to share from this part. Owen played with the toys she had in her office and ended up hitting his head under her desk because he was extremely excited when he saw she had a clock toy.  It didn't even phase him.

Playing with the model heart while getting his
BP taken

This is a diagram of Owen's heart
based upon his Cath results.
You can see where they connected/disconnected things
and all the pressures in the different areas of the heart.

Our next stop was in the Cardiology clinic.  There, we met Dr. A's(Owen's new surgeon) NP, Kate, we also met with Dr. A.  Owen had a physical exam to make sure he was healthy enough to have surgery on Wednesday.  They did their regular BP, POX, and height and weight.  They also gave him a thorough once over to make sure there wasn't anything fishy going on.  Owen's new surgeon, Dr. A said Owen is a great candidate for the Fontan. The only thing that may be an issue recovering, is the way his heart relaxes after the squeeze. We won't know until after surgery though.  

After Cardiology clinic, we went to get a blood draw and chest xray. Unfortunately, I was unable to get a picture of the chest xray because I wasn't allowed in the room due to being pregnant. I did get some pictures from his blood draw though! For Owen's blood draw, we had a child life specialist come help us, he also had special cream on his arm so his blood draw didn't hurt! He did so well and didn't scream or cry!

After his chest xray and blood draws, We walked over to the adult Cardio and Vascular clinic for a vascular ultrasound.  This isn't a normal part of their pre-op day, we had to do it because Owen is a new patient.  Since he hasn't had surgery at their facility, they need to see which veins will work best for the bypass cannulas, or ECMO if, god forbid, they'd need to go that route. They checked the veins in his neck and in his groin.  I'm starting to think those sound waves are mighty soothing for Owen, because he started falling asleep during his U/S! 

Inside the phone booth at AFCH.
He kept saying "It's Dr. Who's Tardis!"

After his ultrasound, we stopped for lunch at the main hospital cafeteria. Owen picked steamed carrots, french fries, and a chicken quesadilla for lunch. They have a pretty large selection in their cafeteria! After lunch we headed back to AFCH to get a tour of the PICU.  The day of Owen's surgery, we will wait in a small family waiting room in the PICU and receive updates on a pager. The cardiac rooms are on the far end of the PICU because it's a little more isolated back there, and that's preferable for these critical kiddos. There are also 5 parent sleep rooms we are able to check out for naps or to sleep in overnight.  The couch in Owen's room folds down into a single bed, so we won't both be able to sleep in his room while he's there.  Once Kevin goes back to work next Monday, he'll be sleeping at home anyways. Owen's room will have a small bathroom too, no shower, but there is one in the parent sleep room area to use.


After our tour we headed home and Owen and I took a nap! Keep an eye out on here and our facebook page over the next few days.  I will post the address for the hospital and the number for the gift shop in case anyone wants to send Owen anything to cheer him up!  Thank you for being such wonderful prayer warriors! 

Saturday, February 7, 2015

3 years

Today is the first day of CHD awareness week.

3 years ago, we made the journey to Children's Hospital of Wisconsin​ where I had a fetal echocardiogram done.  They brought us to a conference room and informed us that our unborn baby has Tricuspid Atresia with a Transposition of the Great Arteries and Coarchtation of the Aortic Arch.  Although we were terrified, we finally had answers after weeks of waiting for this appointment. I know this sounds like mumbo jumbo medical jargon to some of you, so I will explain.

Tricuspid atresia is the absence of the tricuspid valve.  That valve allows blood flow between the right ventricle and the right atrium. There is no blood flowing between those two chambers, causing his right ventricle to be too small to function.  In order to compensate, Owen's heart created two large holes, one between his two ventricles and one between his two atriums. This makes him a single ventricle patient.

Transposition of the great arteries is when the aorta and the pulmonary artery are switched. The pulmonary artery takes the de-oxygenated blood to the lungs to oxygenate it and returns it to the heart through the pulmonary veins.  The Aorta then takes the oxygenated blood out to the body. For Owen, all this blood was mixing in his heart(de-oxygenated and oxygenated) and his body/organs do not get enough oxygen.

Coarch of the Aortic Arch means his aortic arch is too narrow for blood to pass through.  They placed a patch in his aortic arch during his first open heart surgeries to widen it enough for blood to pass through.

In order to create blood flow through the body, they do a series of surgeries called The Norwood, The Glenn, and The Fontan.  These are temporary fixes and usually the Fontan needs to be revised in teen-adult years, if these kids don't receive heart transplants first.  Will the Fontan be Owen's last surgery? Most likely not, many things could happen in the years to come, he could go into heart failure and need a transplant, he could need a fenestration closed, he could need a pacemaker, who knows? There are all things that stay in the back of our mind.  The Fontan seems like it will be the end, but it never really ends for our kids.  They go through life using half their heart which causes many issues down the road such as poor weight gain, poor circulation, in some cases stroke or heart attack, to name a few.

What does this mean for daily life? On a daily basis we administer meds to Owen.  He receives baby aspirin as a anti coag, Enalapril to help regulate blood pressure and improve heart function, and he drinks Pediasure to help him gain weight.  We monitor him for signs of heart failure constantly (excessive sweating, blue lips/fingers/toes, excessive breathing, tiring out faster than normal).  We need to be extremely careful when out and about so he isn't exposed to someone who is sick.  That often means we need to cancel things because someone has or is sick.  It's a risk we can't take with Owen.  Even a simple cold or viral infection could cause him to be hospitalized in an ICU fighting for his life.  We go to the pediatrician's office at least once a month to make sure that the cough or runny nose he woke up with isn't something worse. We limit his public contact in cold and flu season, because everything goes around(And this year has be particularly scary) and he usually ends up catching it.  It's scary how easily he catches something from others.  We spend a lot of time at home, but that's okay because I have Owen here in my arms.

Some people may think we are overprotective or overreacting when it comes to germs and Owen, but honestly I'd rather be seen as overprotective than be pitied because my child passed away from a viral infection he caught.

So this brings me to my challenge for you for Heart Week/Month.  I want you to search for information on the internet on CHD's, I want you to educate yourself so you know what to expect if it ever happens to you, because honestly, the day before we received Owen's diagnosis, I wasn't a heart parent yet, I was a regular parent just like you.  Your world can be flipped around by one sentence and why not be ready for it, why not be prepared, know the facts, learn that it's not a definite death sentence, know your options.  If you are having trouble finding information, please ask me, I can provide websites. I want the whole world to know the facts.

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