Wisdom Heart

Here's another eating pic. I hope everyone enjoys it as much as Sophia enjoys cake and ice cream. You can go here for a whole set.

I am going to try a little experiment. This blog will always be primarily dedicated to news and views related to Sophia's CHD and parenting issues associated with CHDs in general. But, I would like to occasionally post about things outside of these parameters that I think my audience might appreciate. This will be the first of this type of post. Please let me know your thoughts on this idea or if you just aren't interested just skip this post.

Let me give you some personal background on my aesthetics. I studied art in college and have a fine art degree in painting and sculpture. I didn't go to an important school and I do not really create anything of note these days. I believe the purpose of art should be to show people fresh ways to see their world and in turn expand their view of the world. For the most part, I have been completely disillusioned with contemporary art. Particularly, I am bothered with the degree to which self-referentiality and strangeness is encouraged by the fine art establishment. It seems galleries are always looking for that "unique" voice. There is a presumption that the best way to communicate the human condition is by focusing on its fringes rather than the things common to all of human experience. Instead of communicating the depth of experience common to all of us, it becomes like an inside joke fostering higher and higher degrees of elitism. Let me be clear, I am not saying art should be this bland conservative thing lacking expression and doing little to offend or shock its audience. What I am saying instead is this. There are shocking aspects of our world and experience which are common to all of us. In my opinion, art should reference the things the viewer is unaware of in her/his self and the world it inhabits. Instead most contemporary art highlights a sort of idiosyncratic pretense. Because this is a false expression of the artist's experience, it can serve no purpose to the viewer other than alienation or sideshow curiosity.

And though I think, blogging can be quite self-referential and might even promote some degree of voyeurism. It seems less prone to the elitist tendencies of the art world. The blogosphere is a diversity of individual voices coming together in a sort of virtual public square without an editing elite to restrict whether or not a particular voice gets an audience. A direct exchange of ideas is encouraged as opposed to a disconnected presentation by a set of elite arbiters.

What if someone could create a graphical interface which could bring many of these voices together in one place to share their feelings? What if by doing so they could create an expression of the blogosphere's mood at any given time?



Jonathan Harris and Sepandar Kamvar have developed a couple of websites that use a form of data mining to scour through the text of blogs like this one. I know what you are thinking. But, in my opinion this is art and not espionage. It should be noted that the data they collect is never sold. This whole project is done for its artistic merit and has no economic agenda.
The data gathered is used to create a visual representation of the blogging community's feelings at any given time based on the voices of the individuals in the group. They search for specific terms like "I feel" or "I am feeling" and then collect that sentence along with the time, geography, and weather where the comment was recorded. They then represent each sentence as a colored shape whose size, shape and color is indicative of the sentence recorded. The concept is fairly intricate but the result is a really beautiful expression of how a community feels without overshadowing the individual voices that make up the community.

I highly recommend you spend some time exploring their creation at We Feel Fine and see how the internet is feeling.

The other site they have created is called Lovelines. It is an exploration of desires using a spectrum from love to hate. It is interesting. But I feel it lacks the beauty and grace of we feel fine.
Please let me know what you think of their project by commenting here. In my opinion, this is what art is all about.

I guess this isn't really a milestone. But...
Sophia had some real pasta with red sauce today while I was at work. Patty took some good pictures.
There are some more on Flickr! She took Sophia's clothes off in anticipation of the mess. She had to go straight to the bath afterward. That's the measure I usually use for a good meal. She seems to have really enjoyed it. I hope you like the pics.

For some reason, I think it had something to do with privacy concerns, I have been less than specific in my discussion of Sophia's doctors. In other words, I have avoided using any names to this point in writing the blog.
I realized during this last surgery this was not well thought out.
First, the doctors whose care Sophia has depended on, to even be alive in some cases, deserve credit for all they have done.
Second, I started this blog as a way to help the parent's of children newly diagnosed with a CHD. If by posting the doctor's names I help someone find a doctor for their child, I would be serving this purpose.
Third, Sophia has really excellent doctors and I really would like to thank each of them for all they have done to help her get to where she is today.
I have posted her doctor's names in the sidebar, right under the heart kids. Each is linked to what information I found available online. I know some of her doctors occasionally read this blog. If you have online information you would prefer I link instead just email me at the link below my profile.
A big thank you to Drs. O'Laughlin, O'Brien, Moylan, and Hoffman. Your care means so much to us.

Sophia did really great using a paint brush for the first time.
Here is a photo. There are more on Flickr!
I was really impressed. I am really excited to do this activity again.

I wanted to post a comparison picture. The right side of the picture was taken in September 2005, just before her BT shunt surgery, the left side is right after her third surgery. In other words, this was how Sophia looked prior to surgical repair side-by-side how she looks now. She sure has come a long way.

Hi everyone.
Don't have any real news.
I just wanted to show you this picture of Sophia tooling around the house on her little car.
She didn't really have the strength and energy to push this little car around a couple of months ago.
I can't wait until she crawls, stands or walks on her own. Although in some ways I am a little intimidated by her new energy.
She is whole lot harder to keep up with since her stenting. I still can't wait.
Her development has accelerated in almost every way. She has much catching up to do. But, she is smart and has much more energy now. I just can't wait.

We had Sophia's surgery follow-up today. It was really no big deal. We had to get a chest x-ray and see one of the Cardiovascular Surgery nurses. She listened to Sophia's heart and lungs via stethoscope. We reviewed medications.
We had the nurse do a spot check of Sophia's sats, which came out as 86. She looks so much better than 86.
Her lungs were really clear and everyone said she looked really great.
Her incision is healing very nicely. I am so thankful for the care the surgeons put into the chest closing. It is plastic surgery quality. I have posted a picture here if you are interested. I feel like I have assaulted you with the rawness of this whole process enough. So instead of posting the incision line, I chose a cute picture in BLUE. This may not mean much to some of you. But if we put Sophia in blue before her last couple of procedures she looked really bad. She could never look pink like she does in this picture. Plus, this shot in indicative of the mood Sophia has been in since we left the hospital. She almost hasn't stopped smiling since we left the hospital.

I wanted to take a minute to point you to another blog.
Patty and I have just fell in love with little Sammy through his photos and through his mother's insightful and funny writing.
Sammy has a form of HLHS (Hypoplastic Left Heart Syndrome). It is a congenital heart defect that differs from Sophia's in many aspects but obviously there are a great deal of similarities in their situations.
Sammy is having his second heart surgery on Wednesday.
Please visit SnazzyKat and offer your support to Erika, Jay and Little Sammy. She also has another blog called Baby Samson dedicated purely to Sammy, but it doesn't update as often.
I know the family would really appreciate the support.

Erin at Nova's Heart and Poetic Acceptance has posted regarding the thoughts I put here yesterday. She adds the perspective of a parent who has lost children to CHDs. I am really happy to know that my experience is not uncommon. Thanks for the comments. And thanks to Erin for her post.
I feel compelled to share this Buddhist parable. It seems to be appropriate for this discussion, and though it is Buddhist, it has universal meaning. I have excerpted it from a book titled "Preparing for Death and Helping the Dying: A Buddhist Perspective" by Sangye Khadro it is available in PDF form here. This is of course just one perspective on death. There are useful stories in many traditions conveying similarly helpful ideas.

The Buddha imparted the teaching on the inevitability
of death in a very skilful way to one of his disciples,
Kisa Gotami. Kisa Gotami was married and
had a child who was very dear to her heart. When
the child was about one year old, he became ill and
died. Overcome with grief and unable to accept the
death of her child, Kisa Gotami took him in her arms
and went in search of someone who could bring him
back to life. Finally she met the Buddha, and begged
him to help her. The Buddha agreed, and asked her
to bring him four or five mustard seeds, but they
had to be obtained from a house where no one had
ever died.
Kisa Gotami went from house to house in the
village, and although everyone was willing to give
her some mustard seeds, she was unable to find a
house where death had not occurred. Gradually she
realized that death happened to everyone, so she
returned to the Buddha, buried her child and become
one of his followers. Under his guidance, she was
able to attain Nirvana, complete freedom from the
cycle of birth and death.
People may fear that accepting and thinking
about death will make them morbid, or spoil their
enjoyment of life's pleasures. But surprisingly, the opposite
is true. Denying death makes us tense; accepting
it brings peace. And it helps us become aware of
what is really important in life, for example, being
kind and loving to others, being honest and unselfish,
so that we will put our energy into those things
and avoid doing what would cause us to feel fear and
regret in the face of death.

I have added a couple of photos to flickr!.
You can view all my sets here if you haven't been to the flickr! page.
I had to post this one to the blog. I know it will not mean much to any of you unfamiliar with CHDs that cause blood mixing, and I hope it translates via everyone's monitor settings. But, these piggies are really pink.

When we are at the hospital, I use this blog as both a way to convey information and to help bring order to all the information I need to process. As a consequence I usually am not able to post regarding the myriad emotions and thoughts such an occasion brings.
I think posting about these thoughts and feelings can benefit others going through similar situations as well as those who have not had to have such experiences. So, I would like to take a minute to do just that while this is fresh.
It is my belief, the feelings a parent has while their child is suffering are common. This I feel is not related to the relative degree to which the child is suffering. As I have said here before, I think suffering is suffering.
I think it is important that parents of children with CHDs not fall into the easy trap of the "why me?" mind set. There is no benefit to these types of thoughts. I had these feelings very strongly right after Sophia was born. After all, I had spent several months preparing for a healthy child. This is to say I expected her to be strong, wise, and have all the potential to rule her world. Over time, it has become clear her CHD can be an asset in developing these qualities rather than a handicap.
I can honestly say I have not had these feelings since.
In some ways I actually feel blessed by her's and our situation. I have seen so many people take their children's growth and happiness for granted. It is only because of Sophia's heart condition that I have learned to celebrate her every breath and as a consequence my own as well.
There is of course a spiritual nakedness to this situation that I appreciate as well. Even though impermanence is integral to everything I experience, it is somehow the easiest thing to hide from. When I am healthy and all those I hold dear are well, it seems like it will go on forever. This is why illness and mortality can be so incredibly shocking. However when I look honestly at my situation, illness and death are an essential part of living. How would I ever experience the bliss of life without the relative comparison of suffering. Health would mean nothing without the experience of illness and life would mean nothing without the experience of death. I am of course not saying I think death and illness are something anyone should have to go through. These matters are incredibly painful and I would not wish the experience of grief or suffering on anyone. What I am saying instead is this.
As we go through life, it is possible to become quite thick-skinned and isolated. The inherent suffering of impermanent existence can fall from awareness. As a consequence, the experience of blissful joy can also fall from awareness. Having to accept the mortality of my child has laid my awareness wide open. I have become more naked to experience all the universe has to offer, not through the narrow judgments of good, bad, and neutral, but just as they are.
It sounds crazy. But I do not see Sophia's mortality as any different than anyone else's. Any one of us could die at any moment. What is different is this awareness I spoke of above. It is through this awareness that I can truly appreciate the nature of things without all the confusion and apathy life can bring.
So, Sophia's heart defect has reminded me to be open and aware in a way that allows me to experience all that life has to offer. I am able to experience life as it happens and avoid the constant clinging to past and future. In this way, I feel quite blessed.
I do not know if anyone else will relate to this. After all, we all have different beliefs and experiences. I surely do not mean to imply that what I have wrote above is how anyone else should feel or think. I just wanted to write in regards to my feelings about having a child with a congenital heart defect in the hope it might benefit someone.

It took most of the day. But, we are finally home.
Sophia just beamed all the way home. Once we got here she grabbed her favorite toy (check-up time elmo) and started scooting all around the living room.
I hadn't mentioned it as we had other things on our mind. But, today is our 11th wedding anniversary.
I cannot think of a better gift than to be home with Sophia.
She certainly had a rough go. But, she is so strong.
I am humbled on a daily basis by her patience and resilience. She is an inspiration to me in more ways than I could ever list.
Thanks so much for everyone's support through this. I wasn't able to answer the comments we received while we were in the hospital. And there are so many, I will have to thank you all collectively. The support we get from all of you is overwhelming. I do not know how to show how much it means. But please know, it is instrumental in helping us through these difficult things.

Sophia's cardiologist is reading her echo right now. Hopefully, we will be home by the afternoon. She ate about a cup and a half of oatmeal and a whole kiwi for breakfast. So her appetite is better this morning. They did a spot check of her sats this morning and it was in the mid to upper 90s.
Below is a couple of links to a story about a CHD kid, Andrew Geracoulis, that had a special sports wish come true. It was posted on the CHD Families KC Yahoo Board this morning. It is great to see awareness raising stories like this. I am not sure what his defect is. But the Boston Herald mentions he has had three surgeries. The first story link is on ESPN and written by his mother Cynthia. The second link is from the Boston Herald.
Both are short and worth reading.

We are anxiously awaiting discharge.
Sophia has not been eating very well today.
This hasn't kept us from feeding her formula through her g-tube.
We think she may be cutting new teeth on top of all she has been through.
There is some concern with her loss of appetite, grumpiness, and lethargy. There is a slight possibility this could indicate some fluid around her heart. We are getting a cardiac ultrasound tomorrow as a precaution. Assuming it doesn't turn up anything alarming we should be discharged tomorrow.
The atelectesis in the left lung is still evident in the chest x-rays, but her cardiologist is not too concerned and suggest it should correct itself with time. We will likely have a follow-up with cardiac surgery a week or so after discharge. We can get another xray at that time to check on it.
Sophia has no IVs, no monitors, and is pretty much out of patience.
Hopefully, we are home by early afternoon tomorrow.

Sophia is still doing well. I think we are coming to the home stretch.
Once they clear her on her respiratory stuff, we should be released.
Everything else is pretty much back to normal.
They took her stitches and staples out this morning. All her IVs are out.
I will let you know if hear something about release.

Edit: We received a nice blanket from CHD Families while we were in the ICU.
You can see it in the pic I added to this post. It's really soft.

The blood cultures were negative this morning. Sorry I didn't post this earlier. I just found out myself.

Bonus points to anyone who knows where the post title came from.

Hint: She's reinacting a shot from a movie.

Sophia had a good long nap. She woke up right about the time her mommy got back from a short nap at home. Sophia seems pretty ticked but things are progressing.
The oxygen has been off for a few hours now. Systemic oxygen saturation has been around 90%.
Sophia has had one full feed of formula and at 3:30pm she had about a cup of oatmeal and some water.
She is awake and alert and she starting to get some fight back.

We are progressing with bolus feeds. She is getting 185mL over two hours. We are going to try some of her regular foods this afternoon. But, she seems to be tolerating everything just fine. She has a pretty serious case of the "chocolate syrup" diapers.
But, I am just glad she is eating and pooping.
Her lungs are about the same. But hopefully we will make some more progress there as well.

Sophia slept through the night. She has reached her goal with her continuous feeds. She is getting 40mL per hour of Kindercal continuously.
She is a little fussy this morning.
Her weight was a little high this morning, indicating she may have a little extra fluid onboard. They are going to replace one of her by mouth (in her case by g-tube) doses of Lasix with an IV dose.
Otherwise we will hope for a quiet day. I will try to get some new pictures today and post later.

Sophia is tolerating her feeds and much happier. She is sleeping now. Hopefully, she will sleep through the rest of the night.
She is just getting 30mL of Kindercal per hour at a continuous rate. If this goes well, we will eventually switch to bolus(185mL at a time every few hours)feeds. I am in no rush. I am happy to let her take her time.
We are both just so thrilled she is finally getting some nutrition.
The oxygen and respiratory treatments continue. But, I think they are finally helping. I am almost afraid to get too optimistic but things seem to be going pretty well.

For some reason, I lost all the code from my sidebar about two hours ago. Luckily, It was mostly backed up.
I have added some new stuff at the bottom of the sidebar.
I set up a Frappr! Map for the blog. If you do not know about Frappr!, what I would like you to do is put a pin on your location so I can see where the readers are located. It is really simple. Just click on the link below. In the upper right corner of the map page, fill in your name, email, location, and a photo or comment if you like. Then just click the add me button.

Thanks-Michael

Sophia is doing much better today.
We have started some very slow continuous feeds.
She is still getting a little O2.
She has been sitting up in her bed and playing with toys.
We have both had some smiles and a few chuckles.
I will post some new pics to flickr! shortly.

Sophia is having a little better morning.
Aside from the nurses digging for blood for an hour, she has been resting.
Around the time we all went to sleep last night, Sophia's numbers were just perfect. Her heart rate was down to 120bpm. Her respiration rate was around 25, and her sats were 91...yes, that was "91" with no oxygen.
Unfortunately, her sats dropped late in the night causing her to go back on oxygen. She is getting about half a liter now.
Vascular access is here again. She needs blood for labs now and again at 3pm.
Chest xray is still dry. We won't now anything about cultures until tomorrow.
More later...

Things have been quiet for a couple hours now. Once the fluids settled into her system and all the poking and prodding quit her heart rate came down to about 125bpm and her sats have stayed in the mid-80s. She has been asleep for a while now. We will hope things stay quiet for the rest of the night.

Sophia's heart rate continued to rise overnight and into the morning. At one point this morning it reached as high as 188 bpm. The consensus seemed to be dehydration probably brought on by a combination of vomiting and diuretics (lasix). There is of course the possibility she is developing an infection. She has been getting motrin every four hours and still has a slightly elevated temperature. Her CVC test was on the high-end of normal, no strong indications of infection. It is a blood test I am guessing it tests for bacteria colonization from the central line. Her central line was removed yesterday. They took blood cultures and a urine culture. She got three IV fluid boluses and is receiving maintenance fluids.
Her cardiologist had an EKG and cardiac ultrasound done. She has no fluid around her heart and her xray showed her lungs were pretty dry.
She is still getting her respiratory treatments every four hours.
She lost all three of her IVs this morning. So, vascular access was here twice this morning. First to draw her blood cultures and then to start a new IV.
They are treating her for infection with IV antibiotics even though her cultures won't show anything for 48 hours.
For now, she seems to be responding well to the fluid boluses. She is getting a tiny bit of oxygen just to help her breath easier. Her heart rate is trending down and she is finally resting.
This was an incredibly difficult morning. There was one test or procedure after another and a half a dozen people at a time in Sophia's room from about 7am until just about a half hour ago. The ICU attending even came up to evaluate Sophia with the possibility of going back to the ICU.
We are all pretty wasted. You might imagine that I need to know what is going on the whole time. With all this activity and multiple procedures going on at once I was about to completely shut down from information overload.
I will try to enjoy a break while we have it.

We had a pretty rough night last night. Sophia started vomiting around 8pm and a couple more times later. Her heart rate has been up pretty high since yesterday afternoon. We think because of nausea. She seems pretty dehydrated which also could be elevating her heart rate. She has been dry heaving all morning. She is getting some anti-nausea medicine(zofran). And we are going to try some pedialyte in a little while.
She is getting her blakes(chest drains) out this morning. This will hopefully make her hurt a little less.
Her cardiologist has ordered an EKG and Echo this morning. I haven't heard how her chest xray was. But, her lungs were sounding much better last night with her breathing treatments.
I will keep you posted and try to post some pics. I do not think any of us got any sleep last night. So naps will definitely be part of the agenda.

Sophia is doing fine. She is off the oxygen, but she is still receiving respiratory treatments. I think we will get out of here when her respiratory issues are resolved and CV surgery removes her chest drains and releases her. I will keep you posted in the meantime. Hopefully, I will post some photos of Sophia from the regular floor with my next post.

Everybody do a little dance. We are out of the ICU and moved to the regular floor.
Sophia seems to be tolerating oxygen weaning. I just need to make sure her nurses and doctors are diligent about getting her off of oxygen. Obviously, the care is different on the floor. The nurses have more patients and do not do anything to rock the boat. But I am shooting to get her off of the O2 by tonight. Right now, she is only on a very small amount (1/4 liter).
Her chest xray was clearer this morning and she is much more awake. Patty held her this morning and both her and Sophia seemed to really enjoy it.
Plus, she had a good poop a few minutes ago.
We are on our way.

Things are pretty much the same. Sophia still has diminished breath sounds on the left side. She doesn't care much for the treatments. But, she is getting them every four hours. She seems to be resting pretty comfortably most of the time. Once we get her respiratory issues resolved we will move to the floor.
I hope you enjoy the picture.

I thought I would take a minute to post a pic and explain the respiratory therapy Sophia is receiving.
Sophia has a condition called atelectasis in her left lung. This basically means part of her lung is not inflating. The treatments they are giving her (NPPV?) involve sealing a mask over her mouth and nose. When she inhales the therapist provides extra pressure on the bag to create more positive pressure in her lungs. This, hopefully, pops the lung open allowing Sophia to increase her lung capacity and consequently her systemic oxygen saturations(sats). She doesn't like these treatments very much. But, they seem to be helping and she has had some strong coughs since they have been doing them. Her sats seem to be getting better. Hopefully, this will soon take away her need for oxygen.

Sophia is doing pretty good this morning. Her lungs are still not back to 100%. Her left lung in particular is pretty diminished. So today she will be receiving more respiratory treatments to open up that lung.
Her systemic oxygen saturation is in the 70's today. She is getting about half a liter of oxygen, which isn't much. Once her lungs are more open I am sure she will be off the oxygen.
They are giving her some formula via her g-tube. And they have changed her pain management from morphine to longer acting oxycodone. She is also getting some ibuprofen on a regular basis every four hours.
She has been sucking her binky and seems much more awake. But, she is still pretty sleepy.
I will try to post a picture later.

Sophia seems to be tolerating the extubation. She is requiring a lot of oxygen. But is to receive some treatments from respiratory therapy overnight. She still seems to have a lot of junk in her chest. And she is still a little groggy from sedatives and narcotics. But all this would be expected with the difficult surgery she had.
I am going to get some rest.

Sophia is off the ventilator and extubated. Her airway is a little sqeaky. But she is moving air well. She is getting oxygen via nasal canula. Her sats are holding in the mid-80s. Looks like she is going to stay extubated. Progress as promised.

Not much has changed since chest closure. They have made some changes to her ventilator settings that require her to breath on her own a little. They eliminated a couple of medicines for controlling her blood pressure and profusion.
Her chest drainage is way down. They increased her lasix (diuretic) to get some more fluid off her lungs. They increased her calcium to a dose more appropriate for her age and weight. Because we have had no real follow-up on her DiGeorge Syndrome we had suspected her dose was a little low. Plus, calcium is used up in the healing process after surgery. So her low calcium levels may just be an acute reaction to surgery. We do not know yet if she will require more calcium at home or not. The ICU doctors are consulting endochrinology.
Also, her platelet levels were low. So she got some platelets as well. They aren't concerned at this point. Obviously, if they continue to be low they will start looking for a cause, like clotting somewhere.
She has been opening her eyes and holding our hand. But mostly she is still pretty sleepy. So now, we are just waiting for her to wake up enough to come off the ventilator and be extubated. She is just barely breathing over the vent at this time. I will post if anything new happens. But for now we are just waiting for Sophia to wake up.

They closed Sophia's chest at about 3:30pm. Everything went just fine.
We are now waiting for her to wake up a little so we can get her off of the ventilator.
Her sedation medication was turned off after the chest was closed. But she got a good sized dose for the closing. She has to wake up on her own at her own pace. So all we can do is wait. I will let you know when she is off the vent.

No transfusions. This was my suspicion. Patty was just confusing her getting blood with a transfusion. She has however had about every blood product the blood bank offers. She has not had white cells. But she got whole blood, platelets, plasma, and red cells. Her chest drains have slowed substantially. She only had about 20cc output overnight. This means the fluid in her chest is decreasing and the bleeding is stopped. Her urine output has really picked up today after a morning dose of lasix.
She started stirring a little and coughing against the vent after they decreased her sedative by half. She has since received a PRN dose of morphine and versed and seems to be much more comfortable.
I spoke to the surgeon in the hall. They are going to close her chest this afternoon between surgeries. They have two heart surgeons on staff here and each one has two or three cases today. Plus, they just wheeled an infant into surgery from the PICU emergently. It is starting to get pretty busy around here.
Anyway, Sophia is set for chest closure after her surgeons second case, a VSD closure he just started. So likely, it will be 2:30pm or 3pm.
If all goes well and we are real lucky maybe we can get Sophia off the ventilator by tonight. But, they can't wean any of her meds until the chest is closed. Keep your fingers crossed.

Well, we slept last night. And of course, Sophia did the same.
The main changes since my last post relate to blood products. Sophia has received several blood products in order to get her blood make-up back to normal after being on bypass so long. I think she may have got some whole blood early in the evening. She also got some plasma and platelets. And Patty mentioned some transfusions but I have not confirmed yet.
Her O2 is down to 50%. Her sats have held steady in the upper 80s. With one desat from suctioning. With a dose of morphine prior to suctioning this hasn't been a problem since.
That is all I know for now will post more later.

What a terrifying day. We are settled into the PICU now. For those of you out there who have gone through similar surgeries it should be noted that rather than going to recovery after surgery at Children's Mercy the cardiac kids go straight to the ICU from the OR.
I will try to summarize the surgery. As you may know if you have been following the updates today, Sophia was on bypass and her repair was pretty much complete at around lunchtime. However when she came off bypass, it became evident there was a thinning in the muscle wall of the right ventricle. This was evident in the echo because it ballooned out as the heart pumped the blood to the lungs. So, this was the reason she went back on bypass the first time. The surgeon removed the thin weaker tissue and gathered the stronger tissue together and patched and reshaped the ventricle to work more efficiently. Then she came off bypass again and started bleeding. As I noted in the last post, this was likely caused by the combination of the many suture holes in the hard to suture muscle of the heart and the sort of general leakiness caused by being on bypass. This bleeding was never isolated but slowed enough to get her off bypass a third and final time.
So summarizing, this surgery should have been completed by early afternoon. But due to complications went on until early evening.
I know I have been tossing this word bypass around. For those of you unfamiliar with what heart/lung bypass is here is a link with more information. Only the beginning couple of sections are relevant to Sophia's surgery but I think it explains the process used to stop the heart in order to perform surgery.
There are many possible post operative complications associated with being on bypass for a long time and especially like this where Sophia was taken off and put back on bypass three times. First, in order to account for swelling and/or fluid leaking into the chest cavity, Sophia's chest was left open.
There will also be a great deal of attention paid to her blood pressures and chemistry. And she will likely have a lot of bloody drainage from her chest drains. I will keep you posted as things change with her recovery.
Somehow with all the time we have spent in the ICU, this part feels more familiar and consequently less stressful. But, we all know that can change.
Thanks for everyone's support. We had many family and friends here at the hospital. And all the comments on the blog mean a bunch to us.

Sophia is out of the OR and doing better. The surgeon left her chest open, but doesn't anticipate it needing to be open very long. Hopefully, they will close it tomorrow (no promises). I will post later tonight or tomorrow a report on what the surgeon told us. But basically, it seemed we were on the home stretch around lunchtime. Sophia however decided to start bleeding. The surgeon spent many hours trying to isolate the bleeding. I do not think he ever found any particular spot it was coming from, but instead, it was likely coming from the many suture holes from the repair. It eventually slowed enough to get her off bypass. It got pretty terrifying for a while this afternoon, when they were not sure if they could isolate the bleeding. We are checking in to the PICU now. More later...

So, things are not going as smoothly as we had hoped. Sophia is on bypass for the third time. Apparently, there is some bleeding. I don't think it is anything major, but the surgeon is suturing now. We are hoping for a speedy resolution. But, at this point we are anxiously awaiting news.

We hit a little snag. They took Sophia off bypass and did an echo.
The echo showed there was part of the pseudoaneurysm still left attached to the right ventricle. So, they had to put her back on bypass in order to remove it. So it will likely be a while. I will post when I know more. She seems to be tolerating the surgery well. This is just a little set back.

Sophia is about half way through surgery. She went in around 8am, I think. We arrived at the hospital at 6am. They took her vitals. We signed consents and met with anesthesia and the OR nurses. Sophia got a dose of Versed and was pretty out of it when they took her.
It was a couple of hours before they had got through her sternum and started her on bypass. But she is on bypass now. Her cardiologist successfully placed the stent in the left pulmonary artery. It was stretched from about 3mm to 10mm.
The surgeon was just beginning to put in the new conduit at our last update. I will post more when I am able.

We just got back from the lab. Unfortunately, we couldn't remember which of Sophia's arms has the best vein. So after they dug in her left until she was screaming. We insisted they use the right. So, the crook of Sophia's right elbow is the spot. I may call on all of you to remember this next time. So remember, because there will be a quiz in the future. We have to be at the hospital at 6am tomorrow. I will post updates as I am able throughout the day. Thanks for everyone's support.

New photos added to Flickr.