Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.

Wednesday, April 11, 2012

Home at last!!!

Nicholas leaving LPCH
Yesterday was a bit of a whirlwind....we were still in the CV-ICU until afternoon, when they informed us there were still no beds to transfer to upstairs.  So we were kind of in a waiting mode, not sure what was going to happen next.  Then before we knew it, they were getting us ready to DISCHARGE for good!  We left the hospital at dinner time, so by the time we stopped for a bite to eat and gased up the car, it was pretty late.  It was really nice to get home and sleep in our own beds.  Nicholas looks really good, for having just had open heart surgery a week ago.  I feel very grateful that everything went smoothly and we can get our family all home and start his healing together.

Monday, April 9, 2012

Monday April 9, 2012

We have had an exciting last 24 hours here in the CV-ICU.  Yesterday, we found out that Nicholas was ready for his chest tube to come out.  The tube was the last thing to "pull" after the last two surgeries, so we were rather surprised that it was coming out after only 3 days.  We were glad to hear it too, because poor Nicholas has been so uncomfortable with it nestled inside his body.  So the nurse gave him a dose of morphine for pain control and a dose of Ativan for anxiety and to help him relax.  The morphine had already started to do it's thing when the Ativan was administered through his IV.  Almost immediately I could see his eyes get glassy and start to unfocus.  The tube was pulled, and we expected him to come back to normal within a few hours.  Well, he didn't.  He started hallucinating and talking gibberish and seeing things.  At first, the nurse kind of blew me off that he was acting abnormal.  But then, when he asked her if she had "sticky feet" (like a gecko) so she could walk on the wall, she started paying closer attention.  He was sitting on my lap at this point and he kept asking me if we were going to fall.  He was looking at the curtain on the wall and he told me that he was sure if we stood up, we would definately not be able to stand on that curtain, that we would fall.  He thought anyone who came into the room was walking on the wall or the ceiling and that we were suspended on a ledge and would fall if we move.  He also kept asking where we were; he thought we were in a different room, in a different bed, even though we have been in the same place since Thursday last week.  He was so upset that his heart was racing and tachycardic, setting off machines and bells.  He argued with me so much that I finally agreed with him that we were in a different room, and that we were going to be staying here for the night and we would just have to stay put.  He would ask me the same things over and over.  He kept reaching his hands and feet into the air, trying to grab I don't know what.  I had to pull my chair next to his bed and lay my head on his pillow to assure him he wouldnt fall over the edge and that I would promise to keep him safe.  If I moved the bed or shifted my body, he would startle and hold on for dear life.  And then he would ask me the same questions over and over: Where are we? Why am I in this bed?  What are these people doing to me? Are we going to fall?  Where is my bed?  Why does the room keep changing?  And on and on....This went on for nearly 12 hours.  I couldn't leave him, so naturally, my body woke up stiff and extra tired this morning. Oh, and did I mention super emotional?

This was one of the scariest things I have ever experienced through all of this heart stuff.  I don't think I can explain how scary and exhausting it was.  I was just happy that as soon as the Ativan had coursed through his body, my boy came back to me.  So now we are to list Ativan as an allergy on Nicholas' medical history so this never happens again.

Nicholas asleep in the wagon after a ride
After breakfast this morning (Monday) and another echocardiogram, chest x-ray, and EKG, we got Nicholas out of bed and took him on a wagon ride.  He really enjoyed that.  He was a little bit upset that we didnt take him upstairs to the play room, though.  Two loops around the CV-ICU and he was pretty tired.  He really thought he could walk, but instead decided to ride in the wagon.  When we got back, the medical team had looked at all of his information collected from this morning and they determined that we could pull a few more lines.  He hates this.  He is afraid to see blood and he absolutely hates it when they pull the tape off of his skin.  So after much ado, his central line and arterial line came out.  One was on his right wrist, and the other was sutured onto his neck and the line actually goes into his artery about 4 inches inside.  This was not fun for anyone, especially Nic. But now they are out and there are 2 less lines hanging from his body. 

We are supposed to transfer upstairs to Intermediate ICU sometime this afternoon.  Apparently the heart surgeons have been busy, because there is a shortage of beds upstairs.  We'll see what happens.

Sunday, April 8, 2012


Here we are, Easter morning...the Easter Bunny came in the night and left all the kids in the hospital an easter basket, and we did our egg hunt at home before we left Folsom. 

Nicholas is not a happy camper these past few days.  He has been really needing us full time.  It is hard to even leave to go eat something without him getting pretty upset.  He also seems to be pretty uncomfortable physically.  His incision has started to itch and he absolutely hates all the IV's and such coming out of his skin.  I think the worst thing is his chest tube....not only is it stitched in place and coming out of his abdomen to drain the fluid, but it is placed internally and wraps from his belly button, inside up to the left side and over his heart, and then comes back in a circle on the right side of his insides.  He has consistently complained of back pain on the right side and I'm sure it has something to do with that chest tube inside.  My brave boy.

I know I haven't been updating so I will try to catch up.  According to the doctors, his LV struggled a little bit once the band was placed, and they routinely put heart kids on meds after most surgeries to help the heart stabilize.  Nicholas' doctors decided to keep him on dopamine for an extra day because although his heart function is good, it is just a little bit less functional than prior to surgery.  So last night (Saturday going into Sunday) they decreased the dopamine and will check later today with an echo to see if the LV is struggling more or if it is handling it's new load.  If Nic's heart is holding steady, then probably he will get released from CV-ICU and go to intermediate care. 

I think so far the worst part has been the eating issue.  He had his last meal on Wednesday night and didn't get to eat until yesterday morning (Saturday).  So he is very hungry, but his tummy can't hold much.  And he is very stopped up, so they have had to give him colase, which is oral and tastes horrible, and he is afraid to go if he has to.  So hopefully his digestive system gets back to normal soon. 

Nicholas on Easter Morning...I had to really push for this smile!
When he was still intubated, he vomited twice.  That was new.  He is definitely not excited to be here, and has been here enough that nurses recognize him and he knows that it's not his favorite place to be.  I suspect we might be staying a little longer than the last two times.  I'll try my best to keep you posted! 

Thursday, April 5, 2012

Out of the O.R. !!!

Just a quick update....

The three of us in the waiting room this morning
Dr. Hanley just came and notified us that Nicholas is out of the operating room.  Just as he suspected, the PA Band was ruptured.  He said in all the bandings he's done, this is just the second time he has seen this happen.  He said they got his gradient up to 90mmHg, which is really good, and his LV seems to be holding up well.  We will wait for a few more minutes and then head up to see him once he's all set up in the CV-ICU.  I am so happy right now...that he is doing well and they didn't have to put him on by-pass. 

In Surgery

My hopes of it being less dramatic due to Nicholas' age was shooting pretty high, but he did really well considering they just started his surgery at 3pm this afternoon.  It was a little easier than the other time when we were the second case, but he was really starting to feel hungry, thirsty, and emotional after we had to wait and wait and wait.

This is the first time that I have been able to accompany him to the operating room....I had accompanied him once to his MRI a while back, but this time he is older, he knows what is going on, and he is smart enough not to be fooled about what's going on around him.  Despite him having his usual dose of "happy juice", he cried when we got in there and he was visibly very emotional about his surroundings.  Usually he is giggling and charming the nurses, but this time not.  So of course, I am feeling emotional as well.  But that's pretty typical for me.

We saw Dr. Hanley while we were waiting in the waiting room.  He again reassured us that they will take good care of him and he explained what he thinks happened to the band.  He suspects that it loosened up or broke somehow shortly after it was placed back in July.  He thinks this because Nicholas' gradient seemed to be dropping shortly after his surgery.  He said that if the gradient had stayed higher until mid way through the last six months, then he would be leaning more toward "erosion".  I am not sure if this is good, bad, or indifferent.  Let's just hope it works this time. 

He is booked for an 8-hour surgery slot, but hopefully it won't actually take that long.  I'll update as soon as I hear anything.


Here we go!....again....

So I know its been entirely too long since I wrote for this blog...so I will catch up quickly and update what has been happening since January when Nicholas had the heart cath and MRI. 

We were disappointed to find out that Nicholas' heart actually lost mass and his LV to PA gradient was weaker than before his last PA band surgery last July 2011.  The doctors really can't explain what failed and will only have a possible explanation when they get him in surgery and look at the band.  Anyway, our cardiologist knew we were really frustrated and suggested we "take a break" from heart stuff.  We actually thought this might be a good idea.  Well, we talked to Dr. Hanley a few weeks later in February and he thought that was not a great idea.  He reminded us that as a child gets older, the heart gets less and less adaptable and that the sooner we try to get Nicholas' gradient up to where it needs to be, the sooner we will be able to do his Double Switch.  He also said that even though he has done over a thousand PA bandings (for l-tga and other heart defects), there is bound to be one that fails, and it just happens to be the July PA banding on our Nicholas.  All the luck.

So here we are, back at our little hotel outside of Palo Alto.  It is 8:30 a.m. and we have to be at the hospital at 11:30 this morning.  We have given Nicholas his last "clear fluids" as of 8:00 a.m. this morning.  He really wants his morning chocolate moo, but that is forbidden.  He asked me why he can have apple juice but not chocolate moo, and I tried to explain (without causing him fear or anxietey) that when he goes into surgery later today, his belly has to be empty so he doesn't get sick.  One other trip to Stanford when he was the second case of the day was especially hard because he was so hungry and thirsty.  I am hoping that since he is older this time it won't be quite so bad. 

Yesterday at pre-op they explained everything to us and had us sign all the consent forms.  It really started to sink in that we are doing this again.  Some of the cardiac team members expressed their sympathies to us, as it is rather unusual for a child with l-tga to need 3 PA band surgeries.  I guess when they have their morning meetings to discuss patients for the day, several of them were sorry to see that our sweet little Nicholas is having his third surgery for banding, and far from ready for his double switch.  So it was "nice" to hear that they hold us and Nicholas in high regard and are sorry to see us here for another go at it. 

When we met with the surgical team, we were reminded that yes, PA banding is a relatively easy surgery, but it has it's risks.  Every time they open up Nicholas' sternum, it creates more scar tissue and it gets progressively harder each time to get to the heart.  Also, he informed us that they will likely be able to see what failed with the band.  There are several theories of what happened and depending on which one is found to be true, they will proceed in a particular direction.  If the band broke, then they will carefully snip the stitches that hold it in place and replace it with an entirely new band.  This can be dangerous because if the Pulmonary Artery is nicked, then massive bleeding can occur and create a serious situation.  This is actually the lesser of two probabilities.  The other possibility is that the PA band underwent "erosion" of the Pulmonary Artery and grew into the artery and is now located internal of the artery instead of external where it should be.  If this is the case, they would have to put Nicholas on the heart-lung machine (by-pass) and surgically remove the old PA band.  They would essentially cut his Pulmonary Artery before the band and after the band and then re-suture the Pulmonary Artery back together.  They would then place a new band on his PA and tighten it to a point where his LV will work harder and get stronger without causing heart failure.  We will not know what actually transpires in surgery until it is all said and done. 

Today feels scarier than all the other times we have been here.  Third time's a charm, right?

Thursday, January 19, 2012

Back For More Testing...

As I start this post for today, I realize that I haven't kept up with this as much as I wish I could have...but such is the life of a busy working mother with four kids....with that being said....

Here we are, back at the children's hospital at Stanford, while our boy is in having his MRI and dual heart cath procedures today.  Nicholas has been doing very well, he is really growing and he is very active, even with his heart trying to slow him down.  Yesterday we met with part of his cardiac team here at LPCH and they said his LV function looked really good on the echo.  They mentioned that the gradient didn't look as high as expected, so hopefully some questions will be answered today during his cath to see what is really going on between his left ventricle and his pulmonary artery.  This will determine what the next step is....another banding?....wait to let Nicholas grow, therefore letting the band tighten naturally?....or the big Double Switch???

Nicholas with Clarice, getting ready to go in to MRI and heart cath
this morning. 

I have such emotions going through my brain right now.  I am so scared of that Double Switch.   I know that it will enhance his life, but the thought of what they actually do...it freaks me out.  I don't think there is a way for a parent to prepare for the thought of a surgeon taking your child in his hands and restructuring his heart. It is just plain scary. 

I will keep you posted....