Still here...

Yesterday we transferred out of the cardiac ICU onto the floor where we originally started.  Today, we will go back up to the cardiac ICU.  Hank is still doing fabulous, but the IV drug he is on cannot be slowed on the regular floor.  This is because as they give Hank less of the vitamin M, there is a risk that he may go back into acute heart failure and it is not something they can address on the step-down unit.  

Hank has been following the plan perfectly.  He has increased his diet.  I haven't seen him eat so much in months.  Geez, I wish I would have known his heart was failing and all this time he wasn't feeling good.  Sure makes me feel terrible.  

The final consensus on Hank's failure is that is was caused by his pacemaker.  It's called pacemaker induced Cardiomyopathy, and is really not that common (go figure - Hank needs to buy a lottery ticket).  This has been going on probably since he got his last pacemaker change in November.  

Good news, we have our little guy back.  His personality we have been missing has come back, even with doctors and nurses constantly harrassing him.  I'm scared to go off the milrinone because I worry that he will not be himself again.  It's helped him so much.  We have started on an oral drug to help improve his heart function called enalapril.  He is also getting an oral diuretic (lasix) twice a day, in addition, Lovenox twice a day.  Steve even gave Hank his first shot today!  

Plan:  Move back up to the ICU today.  Tomorrow, more sedation for an ECHO and central line placement.  Stay in the ICU until we are completely weaned off the milrinone and then a new surgery to place another lead on his heart.  We will have the same pacemaker, just more wires.  We will have follow up with heart failure clinic, it seems we will have to come every 2 weeks.  Oh well...

Hank starting to come back

Hank with his spoils of hospitalization

Enjoying many of his favorite meals

Helping a sweet tech with the thermometer

Fresh and clean after a bath

Our baby

Hank loves to help the nurses and doctors listen to his heart and lungs.

Happily playing cars with dad

The sweet child life specialist made this for Hank.  

Standing today with physical therapy.  He didn't like walking quite yet.  

A whole new adventure

warning:  This is very long.  Don't read when you are too tired!

Well, to say Hank has had a small set back would be an understatement!  Over the past few weeks, we have noticed small changes in Hank.  Really, we thought he was just growing into his toddler age, being a picky eater, adjusting to his new preschool schedule, or maybe fighting off a virus or two.  Cardiac wise he seemed great.  He has been off oxygen since his ASD closure in November, has had perfect pacemaker checks, and developmentally has been making leaps!  About two weeks ago Hank started having episodes of vomiting, on and off.  They seemed mild and would be every few days.  He ate and drank between his episodes and seemed to be functioning fine minus being exhausted and wanting to sleep a lot.  Again, thought it was preschool changes and a virus. 
When we took him to see the pediatrician (on call doc, ours was out), he agreed that Hank was fighting a virus.  We took a quick trip to Montana this weekend, which was heavenly, but decided on the drive home to take Hank to the ER as he had slept all day hadn't really peed, and wasn't drinking much.  I thought it was maybe an acute abdomen or something of that nature.  I hoped to get some stuff ruled out with some lab draws. 

At Logan Regional ER Hank had some fluids as he was dry.  They did some lab draws and we soon found out that Hank had hepatitis.  Strange for a little guy.  Now to rule out what type of hepatitis or what caused it.  (Since then, we have ruled out Hepatitis A, B, and C, also Cytomegalovirus, and Epstein Barr Virus causes.)  He also had some ascites (free fluid) in his belly, but not a lot.  The ER doctor didn't think he looked like heart failure, and frankly neither did I, though it's always in the back of my mind and has been since this little guy came to us.  It was decided that we should go down to Primary's where we would be directly admitted by the GI team to see why Hank had hepatitis.  Dad drove us down to Salt Lake as Steve was on a plane with his robotics students. 

The GI team really was unsure of the cause of Hank's hepatitis and wanted to see what was going on.  They consulted with cardiology and had a plan for an echocardiogram to look at the heart function and also another ultrasound of Hank's liver to look for ascites.  Hank had to be sedated for his echocardiogram because there is no way he would be able to hold still for the entire study, poor kid had ketamine, versed, and nubain.  Knocked him right out. 

Right after the echo he went over for an ultrasound of his liver.  Same results as in logan... a small amount of ascites, and liver looks pretty good.  We headed back to our room with Hank to wait for him to wake from sedation, which was taking forever.  While I waited, I checked my phone for results from Hank's echo and much to my surprise, they were back.  I was so shocked with what I read... we had never had an echo with these results before. 

Big  stood out to me  were severely dilated right and left ventricle with severely diminished function.  Heart failure!?! Also, two large thrombus in the ventricle, what?  Shocked.  I told Steve Hank was in heart failure.  Then I ran to my nurse to ask when cardiology was coming and I needed to talk to them.  Then I saw them...

Dr. Pinto was attending for cardio (she knew hank when he was in my belly :))  She drew us this lovely picture of Hank's heart to explain the location of the thrombus and said we are leaving the Children's Surgical Unit and heading to cardiac ICU.  She also talked about Hank's heart failure and they were thinking it was caused by his pacemaker, the machine that keeps him alive!  Pacemaker induced Cardiomyopathy. 

 

 



To explain about this type of cardiomyopathy, it doesn't happen in adults.  It is pretty rare and is caused by the type of pacing that small children have to have.  When the pacemaker leads are placed on a child's heart, they have to put them on the outside, as the vessels that lead into the interior of the heart are much to small.  In an adult they go into the interior of the heart.  This then can lead to non synchronous pacing in the ventricles.  This means that the two bottom chambers of the heart (ventricles) are not contracting and pumping blood simultaneously as they should.  They are a bit off of each other and this causes an inefficiency for the heart, thus making the heart work harder, and causing the muscle to grow and eventually fail. 
Most likely the cause of the thrombus was the blood wasn't pumping through the heart as well, and had areas of stagnation where it clumped together. 

 

 



The above picture is Hank's heart from the echocardiogram.  Down in the bottom point to the left a bit is the large thrombus.  It is in the right ventricle of the heart and is huge!  So, we needed to get Hank started on anticoagulants right away because we didn't want him making any more clots.  We have to wait for the body to naturally dissolve the clot in his heart and hope it doesn't break off and go with the normal flow of blood into his lungs!

 

 

Here's poor little Hank right after he was transferred to the ICU.  We had a busy room!  He was so sleepy and luckily didn't noticed most of the people that were poking and prodding at him. 

 

 

Here is Hank's current x-ray results and picture below.  Such a bummer!

 



 

 

Since all this has happened, we have gotten settled in the ICU and have had a chance to calm down.  Hank has been responding great to a drug called milrinone, which is improving his cardiac output.  This in addition to turning his base rate up on his pacemaker from 90 to 110, his color has come back, he feels warm, and is starting to feel better.  He has had some Lasix and has peed off almost 2 liters of fluid since this morning around 5 am.  He is still not receiving any oxygen.  He also has had a heparin drip to prevent clots and has started on lovenox injections, which will replace the heparin to keep his blood thin.  Steve and I will be giving him these injections subcutaneously into his abdomen and thighs for 6 months up to a year to prevent him from having any more large blood clots.  Awesome!!  Actually, it's not too bad.  I gave him his 10 am injection this morning and he was mostly mad that I pinched him.  Mean mama! 

 

So, the plan is to hang out in the hospital for a while and see how his heart responds.  We have gained a new doctor with the heart failure clinic and will follow with them.  Hank will be discussed tomorrow with the cardiology department and decide his best course of action.  Most likely it will end up being a new type of pacemaker called a biventricular mode that has cured up to 80% of cases like Hank's  We will see.  Most likely surgery upcoming very very soon.  Will keep you all posted! 

 

 

 

 

 





just stuff

 

Lately, Legos rule our life! (Thanks cousins for this birthday set). 

This kid is growing so so quick.  It kills me! 

Drew has started reading in bed at night to fall asleep. 

springtime

Springtime in Cache Valley always brings Baby Animal Days at the American West Heritage Center. 

Look who we ran into!  Lucky us. 

Hank did ok.  Maybe next year he might enjoy it a bit more. 

Drew’s funny pony. 

Hank’s happy/safe place was definitely his stroller. 

Drew was so brave and picked up and held the ducks and chicks all by himself. 

hunting

Sent the dad’s out to hide the eggs.  The kids had a great time hunting them and enjoying their loot.  Hank even participated a bit, I think he grabbed one or two eggs.  New tradition?   I think yes.  

This girl knows how to accessorize!

Boots!

The egg hunters. 

Sorting the loot. 

Hank!

lagoon with friends

Steve and the boys went to Lagoon with our good friends last Saturday while I was at work.  Drew had a ball, Hank didn’t.  Hopefully Hank will get used to it by the end of the season…