Wisdom Heart

Wisdom Heart was featured at Genetics And Health and A Hearty Life as blog of the week. Thanks to Hsien Lei.

Just a quick update on the surgery.
Apparently the surgeon wanted to put a couple of weeks between the cath and the surgery. Therefore allowing time for everything to heal before surgery.
We discussed having the cath in the next couple of weeks but scheduling issues prevented it.
So the dates are as follows.
The cath will be June 1st. It will likely require a two-day hospital stay.
The surgery will be on June 15th with a pre-op appointment the day before.
This was just settled a few minutes ago, so we will call it tentative until we get confirmation in the mail.

I try not to be to reactionary and for the most part I think outrage is an emotion we could do without.
But, I couldn't contain myself about this one. I had to say something.
Today, I was listening to "On The Media" from WNYC in New York via podcast. I heard a story about a pair of children's books.
Help! Mom! There Are Liberals Under My Bed! By Katherine DeBrecht and Why Mommy Is A Democrat by Jeremy Zilber.
Like I said I try not to nurture my outrage but WTF? These are books for children. I understand people get pretty fanatical about their political beliefs. But, I cannot believe we are creating political propaganda for our children. Why would anyone be interested in indoctrinating innocent children into the sleazy world of us-and-them politics.
I want to teach Sophia to be compassionate and non-judgmental, to love people regardless of their views. This is enough of a challenge without introducing this type of dreck. I do not understand why there seems to be so much hostility when it comes to differences of opinion. People seem to nurture the promotion of sectarian ideology over values like wisdom, compassion, love, kindness, empathy and humanitarianism in general. Is there anything of value to be derived from this type of situation. Are we so attached to our thoughts and ideas that we would sacrifice our children's innocence for them.
Here is a quote from a psychologist, Dr. Andrew Getzfeld, excerpted from the story.

What we really don't want, or at least what parents should not want, from my perspective, is to create really mini-versions of themselves, although a lot of parents do that. My belief is that within reason, kids should be allowed to make their own choices, and that's what Piaget said, is that a child learns best by being an active explorer in his or her environment. Now to me, the way I interpret that is that children should try everything on their own, within reason, even if they get hurt - not seriously, obviously - but even if they get hurt, they should be able to learn from that. Instead, if we end up sheltering kids - and that's really a form of sheltering, by saying, okay this group is like this, everybody else is bad - in effect, you're forcing kids really to make a decision before they're able to understand really what the differences are.

I, for one, hope Sophia can be more open-minded than I am able to be. I would rather she embrace the good in people rather than fear their possible differences.
-Michael

So here is the plan so far...
It isn't a complete and detailed plan just yet, as the meeting between her cardiologist and the cardiovascular surgery team was just this morning.
The big picture explanation consists of a combination of cath lab and surgery.
Sophia will need to have surgery to replace the pulmonary artery conduit which currently has the pseudoaneurysm. This is basically a repeat of the last surgery minus the unifocalization.
The other problem is the narrowing of the branches of the PAs. Her cardiologist is still measuring, but I think the narrowing is around 2mm on each side. It is possible to stent these narrow areas in order to widen them allowing more blood flow to the lungs. However, both sides are fairly complicated to repair.
The placement of the stent on the left side is not complicated necessarily by the anatomy. However, it is difficult to get to in the cath lab and will likely be stented in the operating room during surgery. However, the surgeon may decide to repair it by other means if it seems more advantageous to do so once they are in there.
The right side is complicated by the location of the narrowing in relation to where the arteries branch off. This repair will be much more complex and will involve a combination of two stents placed parallel to one another, each going down the separate branches. I know this is difficult to understand without a picture, I will try to explain. When you imagine the part of a "Y" where the trunk ends and it forks in opposing directions, this is where the narrowing is located. In the cath lab, two catheters will be fed through the artery, parallel through the trunk of the "Y" and then dividing, each going up the separate side branches. Stents will be placed partially up each side extending through the narrowing. The stents will then be expanded side-by-side in order to open up the narrow part from 2mm to approximately 10-12mm. There is a reason it requires two stents as opposed to one. If one were used there would be the possibility the stent would only go down one side and block off the other. With two, both sides are preserved.
So, this would all play out something like this. Sophia would go into the cath lab and have stents placed in the right side as explained above. She would be allowed to recover a day or so, and then would go into surgery to have the conduit replaced. While in surgery her cardiologist would place a stent through the incision into the left pulmonary artery.
There is a possibility she would do both at once, but it is unlikely. However the suggestion was made that she could do the cath in the morning and go into surgery while still under anesthetic from the cath. This is unlikely because it would cause her to be under for a very long time. And though the anesthesiologist said that was not a problem her cardiologist and ourselves both think it is an unnecessary risk.
At this point, none of this is scheduled. But, we are looking at late May most likely.
I will post more as I know more.

I find myself lately drifting into a sort of mourning. I feel these thoughts a little bit misplaced. After all, Sophia is doing just fine at the moment. I really shouldn't let the first analysis of the cath have such a strong effect on me.
It isn't like I am obsessed with Sophia's dying. It is just it seems like a more real possibility than before. I should have understood this as a possibility all along. We are all going to die sometime and there is really no way to know when. Sophia will die also and there is no way to know if it will be soon or much later. I know this. Really I do. I completely accept both the inevitability and unpredictability of death. I even see it as an integral part of living.
In the past I mostly contemplated impermanence in relation to my own life. It was seen as this ever looming specter that could strike at anytime taking full advantage of my procrastination and thus not allowing me to complete the purpose of my life. I have literally spent hours with this contemplation and I accept the inevitability and unpredictability of my own demise.
What I have trouble accepting and understanding is how to accept Sophia's life being brought to a premature conclusion. She hasn't had the opportunity to understand the purpose of her life. She is lacking the volition and instruction to realize the potential of her precious existence.
Perhaps, this is pointless worry. In fact, I know this type of worry and speculation is useless. And as I write these words, I realize the gifts I have received from Sophia. She has been an essential component in helping me discover the wisdom and compassion that is essential to the latent good in each and everyone of us.
Maybe, it isn't necessary she purposefully direct her life. After all, she is reflexively loving and kind. She almost instinctively accepts her situation and rarely protests or complains. She has patience that far exceeds that of most children her age. And without revealing too much parental bias, she seems to have a real wisdom about her. Honestly, she has taught me so much more than I will ever be able to teach her.
Though I cannot validate any overall usefulness of worry, I felt it was somewhat useful in illustrating the thoughts and feelings of at least this CHD parent. I don't think parents of healthy children have to face so directly the possibility of losing their children. Because of the conspicuousness of Sophia's mortality, I am compelled to make the most of the time I have with her. And, to the best of my abilities, I avoid doing anything that could give rise to regret. I would never wish our situation on anyone else, but I willingly accept it. And perhaps through this blog, others can learn from our experiences without having to face the hardships directly.

A big thank you to Erin for her support and generosity.
It means a great deal to us to know people are thinking of us.

I excerpted this from an email I sent in response to how I was able to cope with the emotions I experience dealing with Sophia's congenital heart defect. I wasn't originally going to post it here but I thought others might get something out of it. But, I especially needed to post this as a reminder to myself.
It isn't very polished, being an email after all, but here it is just the same.

The suffering we experience in life is brought about by our inability to face the reality of a given situation.
We hope for the best for our children. We want them to be healthy and we want them to be happy. We want them to realize all our dreams and expectations. By clinging to those very reasonable hopes and expectations, we are unable to cope with the obstacles set in the way of attaining, what seems to be, a very normal life. But, what we fail to account for is change. Nothing is permanent.
No child is healthy and happy all of the time. No one escapes the suffering of sickness and no one is immortal. These things are part of living. We accept them in the proportions we expect them to come in. But are unprepared for the times when they fall outside our expectations.
I remember once a friend was telling me about how their daughter had to have immunizations earlier in the day. They were so upset to have had to see their child suffer from getting shots. In contrast to what we have experienced this doesn't seem like a big deal. But ultimately, suffering is suffering.
I believe it is our natural response, as human beings, to have compassion when we see suffering. This "natural" compassion can however become confused by emotions like fear, anger and jealousy. We replace naturally arising compassion with concepts like justice and fairness, and begin to question why and what have I done to deserve this. The reason I say these concepts confuse our natural compassion is they presume that some suffering is warranted and other suffering is not. Again, I say suffering is suffering.
I look to Sophia to remind me of this. She isn't aware that her situation is difficult. She just lives it while she can.
We should try to do the same. In any given moment, Sophia may smile, cry, sleep, eat, breathe, poop, whatever. These are all part of her existence. I also experience many experiences, thoughts and feelings. If I can accept the impermanence of these experiences, thoughts and feelings and let them pass like clouds in the sky, I become more aware of the moment, the reality of the experience. I am not mired in the "could-haves" and "should-haves" of what might have been. I can accept that they are not real. I can experience the "isness" of what is.
The moment we are experiencing is all there is. I may classify it as a good moment, a bad moment, or something that I have no strong feelings about. But ultimately it is just a moment. The judgment we make on it is ours. We may long for a moment passed or worry about one approaching. But, our worry and desire for it to be otherwise just causes confusion and is of no help with ours or our child's suffering.
This leaves acting openly and with compassion in the moment the only useful choice in not only this but any given situation.
In short, to quote George Harrison, "all things must pass". We have to let go of fear and anger to make room for joy. The joy will pass also, but it will be back.
These kids are such a blessing. If you are open to it, you will learn lessons about love and compassion you might have otherwise missed.
Before Sophia was born I had the aspiration she would be strong and wise, and would influence people to be compassionate and love one another.
Her name, Sophia Alexandra, means wisdom protector. She has exceeded all my aspirations for her. As a consequence her heart defect seems less significant.

Thanks for indulging this little aside. I hope it wasn't too out there for you.
It is this way of seeing things that makes it possible for me to cope with the ever-changing highs and lows of having a child with health challenges.
Any comments are welcomed. I would especially encourage other CHD parents to share there thoughts on coping with the challenges we all face.

Well, we just got home. Sophia did just great with the cath. Unfortunately the news was not at all what we were hoping to receive.
In fact, the news from the cath is really pretty devastating. The left pulmonary artery branches are narrow and will require some attention and the pseudoaneurysm is quite large, but this isn't the really bad news. Sophia's right lung is only receiving 20% of the normal volume of blood flow from the heart. The upper right lobe is receiving no blood flow at all. The problem is, and we won't know this for sure until after the surgeons look at it, there doesn't appear to be many options for improving this situation. The vessels are either not there or very small, we don't know yet if there will be surgical options for restoring the lungs connection to the heart. In the meantime, with the reduced flow to the left lung Sophia is basically functioning on one lung or less.
Here is the situation with the pseudoaneurysm. Please forgive my rudimentary knowledge of the medical stuff. A pseudoaneurysm differs from an actual aneurysm because the hemorrhage is confined between the layers of the arterial wall.
This causes the blood to balloon out, causing a big pouch on the side of the artery. Sophia's pseudoaneurysm is at the right ventricle to pulmonary conduit suture line and is as large as the ventricle itself. Her cardiologist even noted that some of the concern they had been having about Sophia's heart function could have been an error made in reading the echocardiogram. Because Sophia's heart sits at an unusual angle and the conduit is routed slightly differently than the actual trunk of the pulmonary artery would be, it has been difficult for them to find the conduit on the echo. In retrospect, he thinks they may have been mistaking the pseudoaneurysm for the right ventricle. And obviously, it would not be pumping as vigorously as they would expect the ventricle to pump, as it is not a muscle.
Anyway, the surgeon did determine the aneurysm to be present in chest x-rays as far back as fall of last year. This made him believe it would not be necessary to have immediate surgery. So, Sophia's cardiologist is going to present her case at the surgery conference a week from today. This will allow he and the surgeons to discuss possible treatment options for Sophia and get her on the surgery schedule.
My guess is, we will be back in the hospital for surgery within the next month. We'll see.
I will keep you posted.
In the meantime, we are very glad to be home. Thank you for your thoughts and prayers.
-Michael

Sophia is out of the cath lab. She just left recovery and we are settling in to our room.
They didn't do any ballooning or stinting. The pseudoaneurysm was quite large (about the same size as her ventricle. There is substantial narrowing to the stitch lines on her pulmonary artery. The upper lobe of the right lung isn't getting blood from the pulmonary arteries as there does not seem to be a branch connection to this part of the lung.
So here is the abbreviated news. Sophia is going to require more surgery in the near future, probably in the next few weeks. The goal is to repair the pseudoaneurysm and possibly stent the arteries under direct vision in the O.R. We don't yet know how this will be accomplished the surgeon is meeting with her cardiologist and reviewing the film from the cath. I will post more when we know more.
For now, Sophia is out of recovery and resting comfortably in her hospital room.
Thanks for all your continued support.
-Michael

This afternoon, Sophia had the pre-op for her heart cath tomorrow. Anesthesiologists are always really careful about sedating kids if they have had any cold-like symptoms in the past month or so. Therefore, they require a physical exam, usually the day before, to judge whether Sophia is fit for the procedure.
As I had mentioned in a previous post, Sophia has had a cough since the last time we were in the hospital. We saw her pediatrician a week ago and he assured us she wasn't sick. He started treating her with Singulair and Zyrtec, as he attributed her coughing to seasonal allergies. This seems to have made a considerable difference, but the cough still comes back occasionally.
Anesthesia was alright with attributing the cough to allergies and decided to go ahead with the procedure.
Of course, she had to have labs drawn. This is always an awful experience and I was selfishly happy I was at work during the appointment. We have only encountered one or two lab techs and/or nurses who are able to successfully draw labs or insert an I.V. into Sophia without digging around for what seems like an eternity. Sophia is obviously not very happy about being treated as a pin cushion, but, she is a very strong girl.
I am not really sure of all the objectives for the procedure, but I will try to list some of them.
The last time Sophia was in the hospital (when they thought she had pneumonia). They attributed a cloudy spot on her chest x-ray to a possible pseudoaneurysm. This is a tear in the lining of her arterial conduit (the one from her last surgery) that causes an out-pouching of blood in the wall of the artery.
I am assuming, they want to know more about this issue. They may treat it in the cath lab or it may require more surgery. It goes without saying that we, and also her doctors, would like to put off surgery until they could also repair the VSD they were unable to close due to her smaller than expected pulmonary vessels during the last surgery .
This brings us to the next possible issue. Her cardiologist would like to possibly open some of these narrow vessels using a balloon/stent procedure done in the cath lab. This could allow Sophia to show some actual improvement regarding her oxygen saturation. I can't imagine how it would feel to Sophia to have her sats climb above 70s. Her sats have been consistently in the 65% to 75% range since her last surgery, and have never held above the low 80s.
I would say it is also just as likely that they want an accurate picture of the repairs from her last surgery.
I will post when I find something out tomorrow. Hopefully she will tolerate this without complication. It would be nice to avoid an extended hospital stay this time. But, we will take as it comes.
Thanks for all the support we have received so far. I think it is wonderful that we are developing an impromptu community around each others post. Thanks again. -Michael

We went to the park today. Weather was beautiful and the park was packed with people.
Sophia wanted to sit in the grass and eat clover.

In astronomy, a nova is defined as a star which suddenly flares up to many times its original brightness before fading again.
This is a definition one can apply without much effort to this tiny hero whom I have followed via the blog his mother has dedicated to him. Though this incredible brightness has faded from life, the compassion and inspiration it awakened in all of us who cared to open ourselves to him, is boundless and eternal.
We so often hide from death in our culture. It is difficult to imagine things like this can happen to such innocents. But, impermanence is an essentially integral part of the experience of living. Without accepting death, we are unable to experience life.
The same way light goes unnoticed outside the context of darkness.
The strength and will little Nova showed was a lesson to each of us to face the things we find difficult. To show love and compassion when we are scared. To shine with great brightness before we fade is the challenge we all face in this difficult existence.
I personally have learned these lessons and will practice with as much virtue as I am able as a testimonial to Nova's strength and courage.
Please consider making a donation to Nova's family at the donation link in the right hand column of novasheart.blogspot.com to help with funeral expenses.

I was reading a post today on novasheart.blogspot.com about worry and heart kid's health. I started to post a comment, but as it grew, I thought I should post it here instead.

Worry seems to be a natural part of being a parent. And when your child has a severe heart condition that worry can become exponential. But all parents know, you can instinctively tell when something isn't right with your child. And we have been advised by Sophia's doctors to trust our instincts. The thing is. When you spend long stretches in the hospital with monitors for every aspect of your child's health, there can develop a concern born of the little fluctuations in this number or that level. But it has been our experience, these details are less important in the broader picture.

We know Sophia's oxygen saturation levels fluctuate. There are times her nail beds are a little blue and her extremities are colder than they should be. There are times she is warm and pink (..let's say pinkish). But what is important is that we know what is normal "for her". We know when she cries the little vein on the side of her nose is going to turn blue and her lips are going to get a little deeper in hue. We know when things are "normal" and we know when they are not. If they are not we call the doctor.

Sophia has had a cough for 6 weeks now. Our instinct is to blame it on the fact that she is cutting several teeth and the combo of extra drool and her swallowing dysfunction makes her cough. The pediatrician says, it is a stubborn virus. But, they are trained to not blame anything on teething. The point is, it's just a cough. Somehow you just know. Of course there are cardiac concerns, but you know what is normal and what is not.

The thing you learn right away is that the doctors will trust you to tell them when something is wrong. The first thing that happens when you go to the emergency room for the flu or something, is they hook up the oxygen sat monitor and immediately this panic rushes across their face. That is when you step in, before they grab the crash cart, and say that's normal for her. Then they all relax and proceed as though that number were "normal".

We had the option of taking all kinds of monitors home with us when we were discharged from the hospital. We refused to take them. We were such slaves to those monitors while we were in the hospital the last thing we wanted was to be slaves to them at home. This was a very personal choice and for some parents the monitors are reassuring.

Erin, with all your experience as a mother, you will be fine. The connection we have with our children that makes us feel the things they feel, the one that makes it so painful to see them suffer or in pain, has a real purpose. We feel when things aren't right. We know when our child is in danger. As long as we don't run from our responsibility to feel that connection, we will always know what to do. Like you said in a previous post, with long hospital stays, you begin to wonder if you can care for your child, since it takes a whole team to do it in the hospital (or something like that). It is my opinion, it is the environment that causes the lack of confidence. Obviously as parents, we don't know how to perform, or sometimes even understand, all the medical procedures. But once home, its less about medical procedures and more about family responsibilities. These are, of course, no easier than medical procedures. But at least we somehow know what to do.

Any comments from other parents of heart kids or any parents for that matter would be greatly appreciated.

Just a quick one today. It seems the spring weather has come to Kansas City.
We had a notably mild winter but it has hung on pretty well.
I just wanted to post a pic of Sophia in her winter get-up. This was hopefully the last time she will need it.
She sure loves to be without sleeves and socks (and pants for that matter). I am sure she is going to love the Spring and Summer. We will keep our fingers crossed that it does not bring more surgery.

This post is pretty late. This event actually happened last week.
It was nice to meet some of the families in my area who have or have had similar experiences to our own.
Sophia had a great time.
We signed up to be on the organ and tissue donor registry while we were there. I strongly encourage anyone who believes in this to do the same.
This issue is obviously important to us, as Sophia's right ventricle to pulmonary artery conduit from her last surgery was provided by a tissue donor.
And as far as I am concerned if my body could save someone else's life, it has been put to good use.
That's enough stumping.
We tried to play mini-golf at the picnic but it was really windy and a little bit cold. I took the photo of Sophia at the mini-golf course.
They also had one of the CHD Awareness Quilts at the event. Please check out the link if you are interested in having a panel made for your child with a CHD.
That's all I have for now. Sophia has a heart cath coming up in a couple of weeks.
Her oxygen saturations have remained in the 70s since her last surgery. I don't think this is what her doctors expected. Unfortunately her pulmonary arteries are still quite narrow. Perhaps with balloon catheterization we will see a difference.
It sure would be wonderful to see her finally pink and have enough endurance to start doing some of the physical activities (like crawling and walking) in which she has so far had no success. I know she really wants to acomplish these milestones and it is very frustrating for her to not have the strength and endurance to do so.