Reflecting…

 

While Logan has turned one years old it has left me with much time to think about the last year.  When we got the diagnosis, how devasted we were.  I think back to that period and I can’t believe how little I understood and how little I knew about what life was really going to be like.  And then I think back to our very ugly NICU experience which really opened my eyes to massive problems our medical system has.  It opened my eyes to the massive discrepancies between heart centers, cardiologist’s, and other clinicians.  It has changed my world view so much.  Things that were once important are no longer important, things that would’ve seemed silly to worry about just a year ago, worries me constantly every day.  People that you thought would always be there for you….disappear.  And complete strangers become your family.  The journey our family has been on in the last year is about as far off the trail that we set out on as one can go…but I am okay with that. 

The statistics for right atrial isomerism (the specific type of heterotaxy that Logan has) are beyond freightening.  I have read studies ranging from 20-40% survival rate at one year old.  And at five years this number dwindles even further….and statistically the amount of these children that make it to adulthood is painful to even think about.  I try not to dwell on these numbers.  Logan has had every single risk factor for death even among heterotaxy kids (right isomerism, asplenia, severe AV valve regurgitation, obstructed pulmonary veins) and he beat the odds.  I have so much hope for Logan because I believe we have the right team of doctors.  I think we have a brilliant cardiolgoist that has done everything under the sun to keep Logan out of the hospital and to make sure that thru all this he has a good quality of life.  And we have arguably one of the best pediatric heart surgeons in the world, who beyond being exceptionally talented, has the biggest heart and is incredibly compassionate.  I really feel like we can do this.  I really feel in my gut that Logan is going to be one that grows up to be an adult.

 The next surgery is going to be a big one and very risky.  The surgery is going to attach his IVC (inferior vena cava  – the artery that goes to the lower half of your body) to his pulmonary artery.  This direct connection will make it much easier on his single ventricle.  His first surgery (the Glenn) is when they connected the SVC (superior vena cava – the artery that runs up your neck to your brain) to his pulmonary artery, once the SVC and the IVC are connected directly to the pulmonary arteries he will have complete fontan circulation.  This is the ultimate goal.  This is so far the best possible way for single ventricle kids to live.  But all of this is dependant on one thing.  Your pulmonary arteries.  Fontan circulation requires children to have a lot of blood flow thru the PAs and Logan’s PAs are small.  It is going to be difficult for his body to adjust to the fontan circulation having small pulmonary arteries. 

Logan saw Dr. Patel last Tuesday and had an echo done.  He has grown a lot of collaterals because his pulmonary arteries are small and blood is finding other routes to go down.  He is going to need a cath in the relative near future to coil more of these collaterals off so that all that oxygenated blood is forced back into the PAs and reaches his lungs instead of  just getting lost in collateral viens.  His O2 right now is low 70’s.  He will most likely need a cath in the next 6-8 weeks unless his oxygen levels drop futher sooner.  We will be going to Boston for that cath and more discussions will happen at that time about the timing of the fontan.  We have heard that most likely he will have a very early fontan.  Most kids have this surgery between 2-4 years old.  Logan will have his at the latest 18 months.  This is because his heart will not be able to function well on just the Glenn connection for that long.  If we do the fontan too early we deal with having small pulmonary arteries and the procedure is risky….if we wait to long there could be too much resistance and his pressures in his heart and lungs could be so out of whack that it wouldn’t take to a fontan either.  Timing is going to be everything here….and just like with life, every person with a set up lips has a different opinion.  Dr. Patel is going to see Logan in two weeks from last Tuesday. 

 

I would also like to wish a Happy Father’s Day to daddys around the world and especially the ones dealing with children of special needs.  Logan’s Dad said his biggest fear about having a baby was that he would have one with severe medical problems.  It is so interesting because even though his worst fear came true, I think if you saw the way he cuddles Logans, and watches him sleep you would see that his worst fear has grown into the biggest love of his life.

9 thoughts on “Reflecting…”

  1. You are a very strong momma with a very special little boy.Logan is so fortunate to have a mom that is so proactive as you are.He will have the best medial care you can find and that is wonderful.Your posts are very encouraging to read as you give us all hope.Thank you.

  2. Kristen! – that last paragraph made me tear up, because you could be describing my husband. Logan has come so far. You’re giving him the best possible chance he can have, and I HAVE to believe that those statistics don’t mean so much because of that.

  3. Salve,
    I’m a father of a 7 mouth old beautiful young lady, whit same syndrome. Single ventricle and situs ambiguus and all the rest. We knew that before she to born. Pregnancy went really bad, my wife got such severe polydramnios that seemed she was up to delivery an hyppo. Baby born after 8 months, less then 2 kgs, and had stomach surgery at 3 days to remove a membrane preventing her way to the guts. In April, at almost 5 she undertake the Glenn.
    We live in Italy, and we came accross with many family coping with complex congenital heart disease, thought my daughter is still the only heterotaxy syndrome affected around. I feel your pain.I feel your sorrow.
    I found out that in Italy we are plenty of hospitals and medical center able to treat the situation at the best. I know how good the Boston Children’s Hospital is, and I feel confidend that they will do anything is possible and more. Never lose hope. If you want to know how this would be in Italy, just drop me a mail. Logan is a tough boy. They all are. We think they learn, but they teach so much more instead. Every day i sink in more the meaning of the word “strong”. Everyday a new shade. I love Logan’s eyes, and I know he cannot help to smile to everybody, like mine, so full of life they are. A life you can defeat. .
    Un abbraccio,
    Ciao,
    Antonio

  4. Your writting is so beautifully put. Your love is so strong I can feel it coming through the words you type as I read them. Happy Father’s Day Scott. 🙂 Julie

  5. Sweet Jesus….please, please, please…..pour out your healing power on this chidl. Know that we (my mom and I) have prayed for Logan the moment we heard….and continue to pray daily (every mornign without fail). We don’t know him personally but we do know a mother’s (and father’s) love for their child and how our awesome, loving God needs to hear our prayers. May God comfort you and your family during this time….and may our awesome God HEAL Logan so that he may enjoy each and every waking hour of his life.
    Peace in Christ!

  6. I had a son name Gawain Swayze that had heterotaxy! I didn’t know he had a congenital heart defect when he was born! He went thru the Glenn shunt the central shunt the balloon catheter and his O2 saturaturation was also low!

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