4 years later…

Where to even begin.  Its been 4 years since I blogged on here.  4 years! Can you believe that?  So much has changed and what I can tell you unequivocally is that this is a lonely life we lead and because we feel so alone and isolated even when we are in the midst of teams of people and family, I want to reach out, I want to get real, and hopefully find connection through that.  Since my last post 4 years ago there is virtually nothing in my life that has stayed the same.  Logan is alive, I want to get that out there asap, but other than that, there is nothing in my life today that resembles my life before I got pregnant with Logan.

 

I am divorced.

I am now a single Mom.

We sold the our family home

I live in a much smaller house that I am renting.

I have to go back to work after being a stay at home Mom for almost 9 years.

My friends have changed.

My family has changed.

I home-school my children.

Its tough. I get depressed, anxious, and I am always under slept. This is my new reality and it isn’t going to change anytime soon.

My intent for sharing all of this is that I know it is a very common story that many heart parents relate to.  Frankly, all parents of any special needs children can relate to and hopefully through honesty and transparency we can all begin to heal.  The effect of prolonged stress on families, marriages, and our health, cannot be underestimated.  The divorce is across the board, 85% for our families.  I feel that despite all of the medical knowledge that can be easily accessed now on the medical issues our children face there isn’t much on physiological and emotion trauma that we will continue to suffer from even once the acute medical issues are resolved.

Its a big problem.  A problem that has to be faced.  The effects of prolonged acute stress is one of the most harmful things that the human body can endure and yet we have to, at the same time, take care of and support a medically fragile child.  Hopefully this is something we can learn about and share together.

I thought about starting a entirely new blog as a symbol of this new life I am leading but as painful as it is to look back at the past, it cannot be forgotten, and it is part of who I am.  So I will continue with this blog because its been part of my journey and hopefully someone out there reading  this will know, they are not alone, all of us are going through similar battles.  Many years ago I told my therapist a deep personal thought and then said, ‘gosh, that’s embarrassing to admit, its so cliche’ her response has always stuck with me, she said “we are human, and no matter how different we look, we all tend to be more similar than you’d think, we are all essentially just cliches of each other.”

I try to remember that.

I am not the only person who has gone through this, I am not the only person struggling with doubts, anxieties, guilt, and dilemma, fundamentally we all share the same fears and insecurities.

Did I do everything right for Logan?

Could I have done more for Logan?

Should I have done less?

Is it all my fault that my marriage ended?

and the biggest fear of all…

What am I going to do now?

The last 7 years have been harder than I ever imagined life could be.  The first 4 years of raising Logan was a constant fight or flight, adrenaline fueled, psychosis inducing (or to quote the great Dr. Roger Mee) ‘diamond inducing stress’ we had to fight like mad man to get Logan the right medical team (I have never blogged about the things that really happened at the beginning of our journey because they are so utterly painful, and almost unbelievable to most that have not lived in this pediatric surgical world) and then going through awful surgeries, too many times to count the code blues, and crashes, comas, strokes, emergency bedside surgery, surgeries that didn’t pan out the way we hoped, and to be told through all of it, there is a very good chance your son will still die even if you make it through.

The same week that Logan had his final surgery in the cardiac cath lab that was able to stabilize him to point that we were fairly confident that we would be out of the hosptial for at least a few years, my marriage fell apart.  Instantly, with no break, my family was thrust into a divorce.

I honestly thought that after everything that we had been through with Logan that the rest of life would be a cake walk.

 I was wrong.

Throwing a divorce on top of the trauma that my family had just endured was devastating to everyone.  I am going to be very real, there was nothing about it that was easy. And looking back now one of the most damaging aspects of it for me, was that it didn’t afford me the time to process the pain of the medical battles.

For those of you that know me on social media, you know that I, for all intents and purposes, fell off the face of the earth.  This was strictly for self preservation.  Going thru a divorce immediately following all of that knocked my on ass.  I am still in the process of getting up now, brushing myself off, and figuring out where to go from here.

Its hard to even know where to start after taking a 4 year absence from blogging and I don’t know if I have the emotional stamina to get it all in one sitting.  It may just trickle out over time.

However, despite the constant barrage of self doubt, questioning, anxiety, and bewilderment at what life has thrown my family, there are a few things that I know for sure.

We are all in this together.

We are stronger together.

The ‘right’ or ‘perfect’ answer doesn’t exist.

There is vastly more that we don’t know than what we do

There are things that are too broken to be fixed

I will be forever bonded to a group of families that have had to live with, along side, and through these devastating ordeals.

There is always room for hope.

I promise to give a detailed update about Logan shortly.  This was a big step for me emotionally just to add a page to this blog, and hope that you find some patience for me.

sincerely

Kristen Spyker

❤

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.

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Logie Video

I know I have been bragging lately about Logan being so cognitively advanced but I can’t help it! I also just assumed he would be slow.  I mean the kid has been on bypass 3 times in 2 years, he didn’t even hold his head up until he was 13 months old, and he has been on more sedation and narcotics in his short life than I certainly have ever had in my 32 (well now 33) years.

People are always asking me how I taught him this.  In all honesty, I have not made teaching a priority with Logan.  I am so happy he is alive that the only thing I could ever ask for is that he is happy.  He is most certainly physically delayed so watching BabyTV and Leap Frog videos have been a staple of his daily activities, not to mention he spends a lot of time playing toddler iPhone games.

It truly amazed me though, last night, when out of the blue he started drawing letters and numbers.  He drew individual letters and then he would write 23, and then say ‘tweenty free’ and then he would write 15, and say ‘fieve teen.’ please pardon my obnoxious joys and praises but I was utterly stunned with what I was witnessing.  He could not do this last week! It is terrible video quality and I took the video sideways but none-the-less, he is such a joy, beating every odd, he is my heart and soul, and please forgive me for bragging one more time!

So very proud of you Logie.

<p><a href=”http://vimeo.com/57687587″>IMG 1255 (2)</a> from <a href=”http://vimeo.com/user7590468″>kristen spyker</a> on <a href=”http://vimeo.com”>Vimeo</a&gt;.</p>

Holiday Update

We had a terrific Christmas this year.  The last two years I wasn’t sure if Logan was going to live or die and it was pretty hard to really enjoy them.  This year I had a ton of Christmas spirit and really enjoyed the season.  I don’t know what is going to happen next year but this year I had my two boys and they were both feeling well and happy.

I will just share our holiday season with some pictures.

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Christmas Eve

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Ethan my 4 yr old Son.

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First year with our Elf which was fun.  Logan didn’t understand but Ethan loved it. 

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Playmobil Advent Calendars

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One evening when it was just Logan and I we had so much fun baking cookies together.  He filled and dumped this nut chopper probably twenty times.  I was a huge help 😉

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Christmas Eve was again overwhelming for Logan.  I am not sure if its trauma from all his hospitalizations, or some sensory processing issues, or if  its completely normal, but he gets over stimulated very easily and sort of checks out.  Last year he couldn’t stand to be in the same room as the chaos, this year he couldn’t stand the sound of wrapping paper being ripped and crumpled, he sat in this chair for most of the night with his half sister Stephanie and played a game on the iPhone.  He didn’t open anything and had no interest in any toys other than this iPhone and a deck of alphabet cards.

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Christmas morning was the same.  Logan had no interest and made a face and whined every time wrapping paper ripped.  He got some alphabet and counting books and he was set.  Ethan enjoyed the fact that he got to open more presents than Logan.  Yes, Ethan is 4 and yes that is a paci in his mouth.  I have nothing to say about this, other we have just had bigger fish to fry these last few years, and quite frankly I would rather Ethan be putting a paci in his mouth than his thumb which would be picking up many many more germs.

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Love these pictures of Logan looking thru his alphabet and number books.

People were asking me about the book with all the numbers so here is a link on Amazon if your interested.  Logan Loves it!

http://www.amazon.com/ABC-Sesame-Street-Treasury-Numbers/dp/0375800425/ref=sr_1_1?s=books&ie=UTF8&qid=1358020372&sr=1-1&keywords=sesame+street+alphabet

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It was a wonderful Christmas.  Hoping to start building more happy family memories.

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As far as Logan is doing medically he is the same.  His sats are lower than everyone would like and although his cardiologist at Boston is worried we have decided to not bring him to Boston during the flu season.  We are going to wait until spring and then he will have a cath done.  Maybe they will be able to close his fenestration (the large hole in his Fontan conduit, essentially a man made ASD) and his sats would then go up but they may not be able to either.  If they aren’t able these are just the sats we are gonig to have to accept.  The fenestration closure is an all or nothing thing, they can’t make it smaller, its close it or leave it open.

He is still not eating much.  This is becoming very tiresome.  He is hardly growing (at his last appointment is was 100 grams or something) and he is hardly eating.  He is still getting most nutrients from Similac Sensitive Formula which is utterly ridiculous for a 2.5 yr old.  Yes, if you are wondering, “have you tired?” I have tried everything.

I am very anti-feeding tubes and I have actually found myself wondering about a G-tube (stomach feeding tube) lately.  Only for brief moments and I am not really even close to that point. I would only do that if he was continually losing weight and it was a very last resort.

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This is one very finicky and stubborn child and food is the only source of control he has in his otherwise chaotic life.  I have been experimenting with some recipes that I have been having luck with and will post about that soon!

He is still only butt scooting, no crawling or walking, but he is tying! He gets on all fours but his upper body strength is just not there yet.  I believe crawling is going to happen soon.

He is still on Viagra or Sildenafil every 8 hours to help vasodialate his pulmonary arteries to reduce the shunting in his fenestration.  It is working okay, which it was working a tad bit better.  I think the O2 may have worked slightly better as a vasodialator on him but the couple of O2 pts isn’t worth the hassle.

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I also recently got in the mail some pictures that were taken of Ethan and Logan last Christmas. They are some of the most precious pictures I have!  Thank you to Felicia Lewis at FML Photo Design! If you live in the Cleveland/Akron area highly recommend her! More info at http://www.fmlphotodesign.com

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What a difference a year makes!

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2011                                                          2012

 

Also, if you are a heterotaxy survivor or parent please look up The Heterotaxy Network on Facebook.  There is a group of a couple hundred of us and the knowledge level is amazing.  Sharing stories with families from all over the world has truly been inspirational.  DSC03805

Me, Logan, and Logan’s Great Grandma

~Happy New Year!

 

 

 

 

 

 

 

 

 

 

 

 

 

Fontan Update

We are officially 4 months out from the Fotan.  I had more anxiety about this fontan than all previous surgeries combined.  It is so much harder the older they get…..it does not get any easier, it gets way harder.  I remember thinking when we were singing Logan to sleep while his sedative took effect before they took him away for surgery, that I absolutely cannot go thru this again.

So many kids have the Fontan and then their oxygen sats are high 90’s and everything is near perfect for years.  I hear talks of familes that only have to check in with cardiology every 3-6 months.

Although, I did not expect Logan to have as smooth of a Fontan as other single ventricle kids, I didn’t expect him to come home and be satting 68% either.  Only a heterotaxy child goes into a fontan satting 85 and comes out satting 68.  Talk about a complete let down.  I have come to realize (an accept) that Logan may never get to check in with cardio every 3-6 months and it has taken me 4 months to get there.  After Logan being on around the clock Oxygen and now Sildenafil (Viagra) and his sats still are very low, I have realized that I have “buck up” (as my Dad would say) and keep moving forward.  I am not going to have the huge growth spurts, catching up, and just taking off periods that others have after the Fontan.

Logan is still very small weighing in at a whopping 21 Lbs…

Logan is still unable to walk or crawl on all fours.

Logan is still very blue. He honestly hasn’t been this blue since he was 6 months old.

Logan is still not out of the woods….

We had a cardiology appointment on Thursday that I have only been able to tell a handful of people about.  Everything went well…except his sats were 77-78%.  There was a new student nurse that did his EKG, Pulse Ox, height/weight, so I knew this was going to take a lot longer than normal….Because she was a new nurse she happily let me take the lead on trying to get Logan’s Pulse Ox.  I told her that we needed to take our time with this because Boston says that PO (pulse ox) in the 70’s means we have to come back to cath and 80’s means we are okay.

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(you can see in this pic that he is tingeing purple)

I spent almost 40 mn.  trying to get an 80%.  I tried both feet and toes, and his right hand.  I couldn’t get a damn 80%.  About two weeks ago he was looking bluer than normal and I POed him at home while he was watching a cartoon and it said 76-78%.  I just decided to bury my head in the sand and ignore it until his next cardio appointment.

There are so many things that could be going on I don’t want to speculate, hopefully he just grew some collaterals that can be coiled off.

I haven’t even told his doctors at Boston yet.  I don’t know if I have the stomach to go back yet.  And its winter, there could be RSV going around.

I have so many fears going thru my mind right now, that I am trying my hardest to drown out.  But I just can’t help but think, this is not the way Fontans are supposed to go.  And I highly doubt they will be able to close his fenestration this spring. Which is going to mean another whole year of low sats….worrying constantly about him getting a respiratory infection, and not being able to let either of my boys around many people 6 months out of the year.

So I guess now that I am making this post public, I guess I am now obligated to let his surgeon at Boston know what his sats are.  Don’t get me wrong, he knows we have been struggling and have been on oxygen and Sildenafil, but the last he heard Logan was low 80’s.

Taking a bit of a 180 here, there have been some positive outcomes of the Fontan that are hard to ignore.  First of all, Logan is much much happier.  He feels so much better.  I imagine this is because his heart is working so much less and he has mostly passive blood flow (as opposed to his heart having to pump it all out) and are you ready for this?  drum roll……..

He is cognitively ahead of his peers now! He knows the entire alphabet, counts to 12 forward and backward, knows all his colors and shapes, and is very adept at playing various puzzles on my iPhone!.  This is quite amazing to me, I had always thought that everything  he has been thru would undoubtedly cause learning disorders and cognitive delays.  The amount of narcotics, sedation, low oxygen, bypass, and severe heart failure, how could he not be cognitively behind?  Well, he isn’t! And a good friend of mine that teaches elementary school said he is ahead of many kindergardners.

I am so proud of little Logie.  I only hope that he stays happy being physically weak and mentally strong…I am dreading the day when I have to explain why he can’t be a baseball player.

Since I haven’t updated in so long I thought I would share some of my favorite pics of Logie since we have been home.

 

 

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This is Logan shortly after his new-found love for coloring and crayons.

 

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This picture makes me laugh for so many reasons.  Since his Fontan happened when he was a toddler everything that was done to him made him very angry.  I mean VERY angry.  So angry that going to the cardiologist’s office now really pisses him off.  I mean he just had a massive open heart surgery and now he has to go back to the cardio’s office every few weeks?  One time he threw my iPhone at the receptionists desk and shattered it.  But every time we go now, he doesn’t let anyone take his EKG stickers off.  And they do not come off in the bath.  I pick gross bits of sticky glue off his chest for days and days now.

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First time at the Zoo.  He loved playing with the other kids.  This is a first for him.  He has never previously felt good enough to enjoy kids.

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Ethan and Logan waking up after sleeping together on their “floor bed.”  I am completely okay with the fact that my children love to sleep on the floor next to us, in fact I love it.  That is Logan’s oxygen concentrated in the background.

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First time at the pumpkin patch. He was terrified of the wagon so I carried him in my ergo carrier.  He would live in that thing if I let him.  He is very attached to me.

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More coloring….pretty much the only thing that distracts him at the doctor’s office now.

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Logan dressed up as a pumpkin for Boo At The Zoo.  The Mended Hearts Of NE Ohio got tickets donated to them and we all met up there.  A fellow Heterotaxy Mother started the chapter here and it has been great to meet more heart Moms.  You can see how insanely happy Logan was to be out and about.  Most were joking that they never thought I would let Logan come to something like this (germs) but we had some fluke 80 degree weather so I decided to go last-minute.  It was still a risk, but the joy he had was worth it all.

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How cute did he look?!?

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Tried so hard to get a pic of them together.  Tried for 45 mn. and then gave up.  This was the closest I got.

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On of my favorite pics.

This was taken on our drive home from Boston.  We stopped for the night and seeing my two boys in bed together, was one of the best sights I have ever witnessed.

Home From The Fontan

Most people follow Logan on Facebook and they know that we have indeed been home from the Fontan surgery since July.  It went well.  We ended up only being inpatient for 2 weeks, which, for this big of a surgery is amazing for Logan.  Ironically, he came home with much lower sats than he went in with.  Typically a Fontan surgery increases your sats, but for Logan it lowered it.  Dr. Pedro Del Nido decided to do a fenestrated Lateral Tunnel Fontan.  Pedro put a larger than normal fenestration in to make sure that Logan could get out of the hospital quickly.  Many times kids drain fluid thru chest tubes for days to weeks to months after a Fontan, but having the large fenestration reduced the risk of pleural effusions, however it left him with lower sats than pre-fontan.  The fenestration is essentially an ASD to allow some blue/red blood mixing if his pressures get high (this is called shunting.)  This residual shunting made Logan’s sats acutally level out at 68-72% once we got home.  This is obviously not exceptable and we went around and around and back and forth about what to do and if we should cath him.  We decided to be conservative first and try oxygen at home (to vasodiatlate the pulmonary artery) and then we experimented with Sildenafil as well.  His pulmonary arteries were in fact reactive to both and we are now on around the clock Sildenafil (Viagra) and his oxygen saturations are now 78-82%.  This is much better.  Ideally, everyone would like Logan to be 85%, but, it just isn’t happening.

I have not blogged in a long time.  There were a lot of mixed emotions about the Fontan and coming home from it.  For 3 years now I have been told that for Logan to live he would need a Fontan.  I have been anticipating this Fontan for so very long.  The past 3 years have been excruciatingly hard and overwhelming, to be done with the Fontan now…..it feels wonderful! He isn’t out of the woods, we still need to get his O2 levels up, this spring they will attempt to close the fenestion in the cath lab.  If his pressures are too high and they are not able to, he will be stuck with these sats for another 1-2 years, until they try again.

Since we have been home and a million bricks have been lifted off my shoulders I have disconnected from this blog, FB, my phone, and I have been just trying to enjoy my family.

Thank you for being patient with my updates, I really needed a break from all this for the time being.  I do however post more on Facebook and if you would like to follow not only Logan but other kids like him, please look up The Heterotaxy Network on Facebook.

~Kristen

Countdown to Surgery- The Fontan

I am a disaster.   We are leaving for Boston this weekend.  I would give anything in the world not to go back.  This life is so very unfair.  I can’t believe he has to go thru this again.  We have decided to rent an apartment in case we are there for a long period of time (if not…we’ll we will break the lease) but we have decided to take our other Son and our nanny because we think its important to keep the family together. We are leaving this Sun for Boston stopping along the way and finishing the journey on Monday.  The cardiac cath will be done late in the week and surgery is scheduled the following Wednesday. 

We had our last cardio appointment today with Dr. Patel.  A very good friend of mine who also has a child that has the odds stacked against him as well, gave us their good luck onesie!  J wore this onesie thru 3 surgeries and he is doing great.  I was honored to have his shirt passed down to us. 

He did a very thorough echo and everything looked as good as it can be. His Glenn and SVC look wide open with good flow.  All this pulmonary veins appear to have good flow.  His AV valve although slightly stenotic is working well with very minimal leakage.  His pulmonary artery in color appeared to have even grown a bit which is very reassuring.  The pulmonary artery is very important because the Fontan surgery is going to connect the IVC (Inferior Vena Cava) to the lower half of the body making pumping oxygen to the lower half much easier for Logan.  The Glenn connected the SVC (superior vena cava) to the PAs and once we have the IVC connected to he will have a Total Cavopulmonary Connection or a Fontan Circulation.

This is a very basic drawing of a Fontan that is done on a child with Hypoplastic Left Heart Syndrome.  If you take away the right 2 chambers from this drawing you would see what Logan has.  The Fontan is the “Tube Outside the heart” that connects the IVC. 

We had a much smoother appointment this week.  For one thing, Logan is very into counting right now albeit every number is ‘six’.  When he learned that EKG leads could be counted he decided they weren’t half bad…  “six, Six, Siiiix,  Siiiiiiix!” 

He weighed in at 9.7 K or 21 lbs and 33 inches in length.  Right now he is wearing 12-18 month tops and 6-12 months bottoms, well, and then 3-6 months socks and shoes.  Just to give you an idea about his size.

He is saying very random words right now….he says, ‘six’, ‘eat’, ‘hot’, ‘nuts’, and ‘hi.

He is really starting to enjoy Ethan.  They play together all the time and love taking baths together.

You can see clearly the oxygen difference between the two when they are together in the tube.

 

Logie is loves chasing balls.  He throws them, kicks them and then chases them all over the house and yard.

 

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I just want to thank everyone for their support thru all of this.  I literally couldn’t go thru this without it.  I know that this will not be the end for Logan.  He is going to need valve replacements, pacemakers, and eventually a heart transplant.  The transplant could be in 6 months, 6 years, or 16 years, we have no idea.  Living like this is an incredible blessing and curse at the same time. A curse for the obvious reasons but a blessing because it has given us so much clarity.  Clarity on what really matters.  I don’t care about fancy preschools, where he falls on arbitrary charts compared to his peers.  I don’t care about college and if Logan will get a high paying job.  No.  All I care is that both my boys are happy, healthy as they can be, and have a good quality of life. Nothing else matters. 

Life is about this moment right here.  As long as we have each other, we have everything.

While we are in the hospital I will update his Facebook group much more often than this blog.  If you would like to join please look up Heterotaxy Syndrome- Logan Spyker on FB.  I can quickly post updates there from my phone.