I wear red for Logan.

The Month of February is Congenital Heart Disease Awareness Month. Today had me thinking about the last 3 years and everything we have been thru. Honestly, I don’t know how I got thru it. From getting the devastating diagnosis that kept getting worse every single time we saw a new doctor, to having to rock him in my arms for 8-10 hours a day just to keep him calm while he was in severe congestive heart failure, to his first surgery in which we spent 6 weeks in an intensive care unit wondering if he would ever come home. During his second surgery (his ‘sutureless’) which was a complete shock in and of itself, we thought we were having a cath, but 4 days later we were having his 2nd open heart surgery. The most traumatic moment was when we came the closest to losing him. I remember his heart rate was getting up to 285 and his BP was dropping to almost 30….
His surgeon, looking very concerned said (which is forever ingrained in my mind) “I have to get in there right now, there is no time for anesthesia to come, I need to operate now.” We left the room shaking….I asked the nurse, “no anesthesia?” I was told, “well he has morphine in his system.”
These moments are the nightmares I live with every day. I know that I will never be the same.

I wear red for Logan.

Today had me thinking about all the children and their parents that I have gotten to know. The children that have passed on from this life are the ones that leave me with a burning desire to advocate and improve the outcomes for our kids.

I wear red for William.

I wear red for Noah.

I wear red for Elise.

I wear red for Pierce.

I wear red Ava.

I wear red for Rita.

I wear red for Jayson.

I wear red for EJ.

I wear red for Brookyn.

I wear red for Savannah.

I wear red for the countless heterotaxy children that I never met but whom I will forever be connected to by heart.

I don’t think its possible to describe the life we lead as parents to these children. The ups then downs, the unknowns, the waiting, the questions that can’t even be answered.
“there just aren’t enough kids alive, with what Logan has to have any real answers.” I have been told that one countless times.
If you just look at Logan’s first year of life, you will get a glimpse, of what our life has been like.

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As far from any dream about ‘ideal birth plans’ as one could get

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He was taken from me immediately, and I was not able to see him till the next day.  Excruciating is an understatement.

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Staring at my boys the last night before Logan’s first and most risky surgery, wondering if this was the last time Ethan would see his brother. At this point even though Logan looks like a normal baby….he really only had weeks to live.

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His bidirectional Glenn, AV valve repair, TAPVR repair, and SVC ligation.

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Yes, this was Logan’s post-Glenn oxygen sats.

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See how very blue he was in this picture?  It looks like he is holding his breath or something but in fact the path that blood goes after getting oxygenated in the lungs was blocked and he had close to only have of the oxygen in his blood that a healthy child should have.

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At this appointment I was told that Logan’s only chance of survival was a bilateral lung and heart transplant, because that blockage was not ‘fixable.’  This was the point that I decided that the only team I was going to listen to was Boston Children’s Hospital.  They disagreed, and this is when he had his ‘sutureless’ repair.

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Despite Dr. Jim Lock doing an amazing cardiac cath and bringing Logan’s sats up 20 points, it was decided that he needed to have the obstruction surgically removed.

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Despite the surgery opening up the pulmonary veins he still settled out in the low to mid 70’s post Glenn.  His heart however, was not having to work as hard, and for the first time, he didn’t become drenched in sweat while eating or crying.

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Logan on his first birthday.  At 12 months old, Logan could not sit, crawl, or roll, Logan wasn’t even strong enough to hold his head up yet.  He was medically anorexic and wearing 3-6 month clothing.

This was just Logan’s first 12 months of life. 

That is why,

I wear red for Logan.



Baby Pierce Update

Just got off the phone with Jessamyn and Pierce is doing astoundingly well.  For a family that was told surgery would most likely be a death sentence things have really turned around since Pierce was in Boston.  Pierce had surgery on Monday afternoon, went in around 1pm and came out around 8pm and has since, he had a TAPVR repair, AV canal repair, and other repairs with no name because Pierce is so complex that there are no standard repairs. 

 Critical 48 hours after open heart surgery have been completely uneventful with no codes or desats.  He is following his post op recovery to a T.  

I have to say this…Children’s Hospital of Boston never gives up on kids.  They bring hope to kids that others have given up on.  Not just in Pierce’s case but I personally know of 5 other families in the last 6 months whose children were sent home to die by another hospital only to be giving the tremendous gift of life by the Cardiac team at Boston.  CHB is in a league all its own.  Thank you, thank you, thank you, CHB for never giving up…as a Mom with a child who carries an 80% mortality rate you have brought me nothing but hope, and you are doing that every single day for so many families.  Not only do they have the best outcomes but their outcomes are on the absolute sickest children in the world. 

As Pierce recovers beautifully from his extremely complex surgery another little boy named William is set to go to step-down at CHB.  William was another Heterotaxy boy who was sent home to die by another hospital.  Just 2 short months at CHB William is thriving for the first time in his life! For the first time in his life he is all smiles and off a ventilator.  Children’s Hospital of Boston has given these two Heterotaxy families Christmas Miracles!  And from the very very very bottom of my heart and the Heterotaxy Community THANK YOU BOSTON! 


Meet Baby Pierce

Meet Baby Pierce.  He has a very similar type of Heterotaxy that Logan has.  Jessamyn (Pierce’s Mother), myself, and many others fought like mad to get him transferred to a heart center that has more experience with  these types of children.  That was going to be his only shot at living.  Pierce is so sick that even in the best hands his recovery is going to be very hard.

For a Preview of the CNN piece please veiw the short promo piece on the below link (takes a little time to load…) 
Finally, after the fight of our lives, Pierce arrived safely in Boston last Fri. night.   He is going into surgery today.  Today is the day that Pierce’s heart will get fixed.  Please keep this family in your hearts today as Pierce under goes a long long long surgery.

For the full story on Pierce please tune in to Anderson Cooper 360 on CNN tonight.  This is a very important story.  This is a story not only about just Pierce but a story about how difficult our current medical system makes it to get our children the best care we can.  This is a story that affects us all.

And please remember to check out The Heterotaxy Network on FB we have a small but mighty group of heterotaxy families.   I can guarantee you that there is no group on the planet more knowledgable about heterotaxy than our humble group of families.

Open Heart Surgery…again

Well this has been one hell of a week.  Logan did great on the plane, slept the entire time.  We arrived in Boston at 7pm and took Logan to the ER just like we were told to do.  We were under the impression that it was going to be just checking his pulse ox and respiratory rate and based on that we would either get admitted or be able to go back to the hotel with him.  Wow, was that not what happened. 

To be honest, no one had a clue what was going on.  We were in the ER for over 4 hours before anyone from cardiology even came down to talk with us.  His idea was that we get all the pre-cath blood work done while we are in the ER.   That seems logical although it was now 12AM and I wanted Logan to actually be able to sleep before his big procedure.  We told them we wanted to just take him back to the hotel and check in early in the morning.  Then someone comes in and says that we can’t leave because his Potassium is at a critically high level and that if we take him back to the hotel he might arrest and die.  Ugh….

This was a ridiculous statement to make to us for a number of reasons.  1. being that this is a kid that is laying here smiling and happy.  2. His kidney function has always been perfect. 3. His heart function is good 4. His EKG was normal 5.  He wasn’t dehydrated 6. there was absolutely no reason to believe that this number wasn’t a lab error. We told them we would take our chances and that we were going back to the hotel.  At 3AM I told them that this was it, this was my bottom line, that Logan was having a major procedure in the morning and that I was not going to keep him up any longer.  We got him dressed to leave and someone comes running down and says ‘wait we have a room for you now.’  So we were brought up to, good ole’ 8 EAST.  I know there are many of you reading this right now that are very familiar with 8 EAST.  It was very surreal being back. 

The next morning Logan had his cath.  We were very nervous because in the back of my head I kept thinking, ‘what if they do find scar tissue in the individual pulmonary veins”  if they do this is a scenario that would very likely lead to the double lung and heart transplant.  We met with the Dr. doing the cath before hand and he said he was very confident in his ability to  get Logan fixed up, unless the scar tissue was in the individual pulmonary veins.  We got updates every hour on how the cath was going.  It was long.  I believe it was 4-5 hours long.  The doc (Dr. Locke) said this was about as hard of a cath as you can do but that he was very fast. 

It turned out Logan handled the Cath wonderfully.  He did better than EVERYONE expected.  They had told us to expect him to be intubated overnight and in the ICU over night.  Not the case, Logan was extubated right away and after 2 hours in the recovery room we headed back on over to 8 EAST.  Dr. Lock came and talked with us.  He is a very nice man, he walked right in and said ‘Hey, did you hear?  NO bad news!”  He said this was very manageable, that Logan would need a couple more caths and an even earlier fontan, but that things looked good.  We were soooo relieved.  Everyone said that most likely Logan would be able to go home tomorrow.  That night Logan had a fever of 101.5 and was very fussy.  They said that was par for the course because during the cath he also had over 20 metal coils put in him and it is standard to have an inflammatory response to that.  Other than that though he really did great.  And check out his oxygen saturation after the cath….

That middle number is his oxygen sats.  He came in at 66-69 and after the cath his 80-84.  We couldn’t be happier.  We got all the discharge paper and got Logan dressed when a nurse came in and said that Dr. Del Nido said he would like to speak with us before we leave.  We just thought he wanted to stop in and say HI.  Oh no, this was not the case at all. 

Dr. Del Nido told us that although the cath went well it didn’t open up the confluence nearly as well as he would have liked.  He said that the diameter was increased from 4.5 to 6 but he wants it 10 cm or bigger.  The cath brought his Glenn pressures down from 22 to 16 but that 16 is still high.  He said he would like to go ahead and surgically make this confluence bigger to bring the pressures down even further.  He said in the long run it will give us more time to hold off on the fontan and we will have less problems with fontan.  He is very worried about all the collaterals that Logan has.  He thinks with the pressures this high they are just going to come back.  That this cath result won’t last very long.  And if we do a wait and see then will have to bring Logan back after more collaterals have grown, pressures are back up, and have to redo the cath all over again before surgery.  He thinks it would be best to do the repair the right way and to do it now when Logan is in really good shape. 

I am not going to lie.  I felt kicked in the stomach.  I also believe my whole body went immediately into shock.  We were literally about to walk out the door to go home.  Talk about a paradigm switch.  I had a long conversation with Dr. Patel on the phone about whether to ‘wait and see’ or to just get this corrected the right way, right now, and he agreed with Dr. Del Nido that we should get it done now.  He thinks that if Dr. Del Nido can confidently and fairly easily get Logan’s pressures a lot lower than we should do it.  And he didn’t think bringing Logan home and then bringing him back to have to go thru all this again was the right thing to do. 

Dr. Del Nido thinks that it will be only 4-5 days in the ICU and another 4-5 on the floor.  I take this with a HUGE grain of salt because nothing ever goes that way with Logan, but I do agree that this surgery is going to be nothing like the last one.  The last one involved multiple repairs and significantly changing the hemodynamic (blood flow) this is just putting a patch in the confluence and widening it up.  Never the less it is Open Heart Surgery and I am very scared. 

Surgery for his TAPVR re-repair is Monday at 7:30AM.  He is first case and this surgery shouldn’t take as long as the last one. 

It is also Feb. 14th Valentine’s Day.  I guess there could’t be a better day for heart surgery.