We are Home!

We had an exhausting week and are so glad to be home!  We spent the day resting yesterday, in fact, Owen slept for all but three hours all day.  Our hotel let us do a really late checkout since Owen was feeling so yucky.  This cath has kicked his butt. 

Uncle Rustyn came down from San Fransisco to hang out with us in the hotel and we went to the Palo Alto Shopping center for lunch and to soak up the cool weather before heading back to the desert.  The flight home was quick and we saw a beautiful lightening storm as we approached Phoenix. 

Owen has had periods of pain and he will cry out saying his heart hurts.  He rubs his chest and whines.  During this, he starts to grunt heavily with his breathing, as if he's breathing through the pain.  I have been giving him ibuprofen and within 30 minutes he's either asleep, or feeling okay to watch a movie.  It's not constant pain, but intermittent, or else we'd be in the ER.  I called Dr Stock today, I hate to bug him on Sunday, but I needed to know what to do.  He said to trust my instincts.  If it continues on and I am worried, that I should take him to Phoenix Children's for a chest xray and EKG.  I try to avoid the hospital at all costs, but will take him if it continues. 

Currently, he seems okay and is playing Wii.  He slept from 8am to 3pm today after sleeping a solid 12 hours last night.  He had a few episodes of the above chest pain/breathing today, but it's been about three hours since his last one.  We see Cardiology on Tuesday AM, so I'm hoping things stay okay until then.

We received a script from Dr Rosenthal to triple Owen's lasix dose, but he is already pretty dry.  I told Dr Stock I was going to wait until we saw him before increasing the meds.  I'm just too paranoid at this point to make any changes. 

It's good to be home in our own beds.  We all slept so well last night!  It was nice to come home to a clean house and now I need to stock up my fridge.  It was a nice trip and now it's time to get ready for school, there are only 10 more days of summer break. 

Grateful Hearts -- Medical Results

Owen had a great night in recovery. He continued to be so sweet and polite to all the nurses, and laid flat with his legs straight for 6 hours post cath. No drugs needed. He's just a rockstar!!  Kamryn picked out a Darth Vader toy from the Starbucks cart that came around with coffee and snacks for Owen.  He loved it so much. 

Since they coiled 4 large collaterals in the cath lab and he was under anesthesia for over 6 hours, they kept him overnight in the short-stay unit.  It was our best hospital accommodations yet!  We had a huge private room and each got to sleep in our own hospital bed.  Kam and Carson headed back to sleep at the hotel around 7, so Owen and I got some one-on-one cuddle time in.  We both slept pretty well, but we are still dragging today.

Owen was discharged by 8 and we headed down to the cafeteria for breakfast with Sis and Daddy.

We then headed over to our meeting with Dr Hanley, Owen's cardiothoracic surgeon.  This is where things get complicated.  He started out by telling us that Owen is not going to be a good Fontan candidate at this time.  Obviously, not the information we were hoping for, but we are choosing to look at the positive side of the situation. 

There are a couple factors that we are dealing with...

Owen's Glenn pressures are at around 15 which are the pressures to his lungs.  His right atrium pressures are at about 10.  If they went forward with the Fontan, his pressures will increase with the new circulation to about 21, which is entirely too high and risky.  If his pressures were about 7 points less, then he would be in an ideal position.  The question is how do we lower those pressures.

Before Owen's tricuspid repair surgery, he had a cardiac cath in September.  His pressures were a little lower than they are now.  The biggest issue at that time was the severe tricuspid valve regurgitation, which over time will significantly decrease his heart function and wear his heart out.  We had no choice but to repair/replace that valve. 

In February, Dr Hanley was able to repair the valve and his regurge was significantly reduced to a mild regurgitation and remains there.   This is great news!  The issue now is the tricuspid valve stenosis, or blockage of blood flow from the right atrium to the right ventricle.  This is causing the increase in gradient pressures seen in the cath lab. 

There is no further surgery that would be beneficial on the tricuspid valve.  There is a mechanical valve that can be used, but it would essentially not work much better than his current valve and the surgery wouldn't be beneficial.. that's out.  A pig valve would solve all his tricuspid valve issues, most likely significantly reducing his pressures and the Fontan could be successful.. the biggest issue with that is quality of life.  Owen would be having open heart surgeries every 3-5 years or even more frequently as a pig valve wears out quickly, especially in small children.  It's not just the ideal option at this point. 

Where does this leave us? 

We had an appointment with Dr Rosenthal this afternoon and he was as optimistic as ever!  We just adore the entire team at Stanford and have such confidence in their expertise.  They have such a positive outlook on things.  Back to the plan.

We are trying every trick in the book at this point.  Owen is currently on 1 liter of oxygen 24/7 and takes many medications.  That's only going to increase.  We are hoping to use a series of medicine and oxygen therapies to see if we can get Owen's pressures to drop, even a few points and get him to a safe Fontan candidate.  That is the long term goal.

Currently, Owen is on the following medications...

Captopril 60mgs a day  (heart function)

Digoxin 65 mcgms a day (heart function)

Lasix 13 mg a day (diuretic)

Aldactone 13mg a day (function and diuretic)

Carvedilol 10mg a day (beta blocker)

Asprin .5 tab a day (blood thinner)

Omeprazole 7mg a day (reflux med)

The plan is to increase a few of these medications.. specifically the Lasix will double.  We are also going to reintroduce Sildenafil at a very high dose (Owen has been off this for a year since the last cath).  There are some other meds we can try later down the road if these don't work.. we'll start here. Dr Rosenthal would also like us to try to increase his oxygen to 2 to 2.5 liters.  He certainly doesn't need more than a liter to keep his sats at 80, but the idea is the increase of oxygen could increase his oxygen in the lining of the heart allowing it to relax more. 

All of therapies could just be a long shot.  They may not work.  The hope is that they will decrease his pressures, even a few points. 

We will plan another cardiac catherization for six months, or February 2012.  Owen will be FOUR!!   We are going to reevaluate him at this time.

This was certainly not the visit I was hoping for and I really hoped that the Fontan would happen this fall, Owen could ditch the oxygen and would be starting preschool in 2012.  This was my plan.. not HIS.  I accept that. 

We are so happy that Owen is doing so great clinically.  He is getting physical therapy twice weekly, including gymnastics and pool therapy.  He is getting big at almost 33lbs and 39".  We are going to enjoy our fall, enjoy Owen Make-A-Wish trip to Disneyworld, and have one heck of a birthday celebration in January!

As the information of the day settles, I am getting excited at the idea of not sending my son into the OR in another month.  When I look back over the last 2 years that we have been traveling to Stanford, my heart is so full when I see how far Owen has come.  He was one sick little guy and we were talking transplant and antibodies.  We are now experiencing him grow up and his half a heart is still kicking butt!!  Owen is so brave, loves his cardiology visits and doesn't complain a bit.  We couldn't be prouder and we choose to accept the news of today with grateful hearts. 

Preliminary Cath Results

We just heard from Dr Fienstein (cath doc) and Owen is out of the cath lab on his way to recovery.  He did great for being under anethesia for 6 1/2 hours!  Here is the rundown..

His MRI took about an hour and a half and we don't know the results of those images... yet. 

The cath started around noon and they saw two large collaterals that they coiled successfully.  All his pulmonary arteries are beautiful.  His pressures are "okay."  His heart function looks good based on the echo results.. only a mild decrease in function.

It looks like his Tricuspid Valve continues to be an issue.  In February, Dr Hanley repaired the tricuspid valve and was able to take it from a severe regurge to a mild one.  By tightening the valve, we ran the risk of valve stenosis.  His valve stenosis is borderline.. not a mild stenosis, not a severe stenosis.  Moderate.  We went from severe regurgitation, to moderate stenosis.  Not the news we were hoping for.

We are now left with "will Owen be Fontan eligible?"  The answer we have right now is.. 'he's borderline' and the entire team will have to review the Echo data, the cath lab data and the MRI results. 

The good news in all this is that his Right Ventricle pressures are still okay.  I was hoping for great news today.. we didn't get horrible news. 

We have a meeting with Dr Hanley (surgeon) tomorrow morning and he will have had time to speak with the cath lab doc and also review all the data before meeting with us.  I'm hoping he can give us some idea of what his plan is. 

Tomorrow will be a BIG day of answers.. I'm hopeful.

Tonight.. I will cuddle my little fighter as we sleep in a tiny pediatric hospital bed together.  I'll update more tomorrow.