How Logie is getting around.

See what  I mean about him being the cutest thing ever?  I am not biased at all!!!

Happy Thanksgiving

 Although, Logan didn’t eat any turkey he ate about a bazillion bread and muffin crumbs 🙂

Happy Thanksgiving from Scott, Kristen, Ethan, and Logan.

A Long Summer Day

 

 

 

More Reflecting…

I took the above picture of Logan and it reminded me so much of one of my favorite pictures that I took of him when he was a newborn. 

The last year has been such a daze…I barely even remember some parts.  Like when he was 1-4 months old and he had continual blue spells and I literally had to rock him for 6-8 hours a day trying to calm him down.  I remember once I stood and swayed him in my arms for 3+ hours straight because it was the only thing I could do to keep him calm.  When he cried he sweat so bad and he turned so blue. 

Even his first OHS seems so far away even though it was only 7 months ago.  I can’t believe how much we have been thru in the last 18 months, it is truly mind-boggling.  In the last year I have prepared for his birth…and prepared myself mentally for his death.  We have watched him over come tremendous odds and we have watched barely clinging to life. 

So Logan at 12 months old….

Here are the Stats….

Weight: 7 Kilo (15.4 lb.)

Length: 27 inches

Clothes size: 6-9 mo. onsies and 3-6 mo. pants

Strength: Holds head (not indefinitely though, he does get tired) can roll from stomach to back (not vice versa though).

Untitled from kristen spyker on Vimeo.

I am super happy about this new skill.  It gives me hope that he has some ability to get stronger albeit very very slowly.

Words: Barely talks but occasionally babbles dadda…mamma…and something that sounds like all done.

Likes: Baby TV (its a network on Dish and he it completely addicted), he loves the texture of foam, especially the little foam bath stickers, he loves his Little Giraffe blankets, and his Wub a nubs. 

Dislikes: Groups of people, the sun, tummy time, anyone in scrubs or a white coat (except for Dr. Patel, he loves him!) and hats. 

Food: He eats next to nothing.  The only thing that he will eat is Mum Mum biscuits but they have next to no calories so I don’t even like him eating them.  He will also occasionally eat a few cheese puffs.  That is it.

 

I really wanted to take some cute pictures of him today and I guess he just wasn’t very smiley….

And then I don’t know what I was thinking but I really wanted to get a picture of my two boys…. haha that didn’t work….

 

I did manage one smile at the end!!!! And then a few more with Momma and Dadda…

I will update on after Logan’s cardiologist appointment on Tues.

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.

Long overdue update.

So after being very confused about how Logan can be doing so great heart wise and yet still be blue and breathing heavy, I pushed Dr. Patel to do an echo sooner rather than later.  For my own piece of mind I just couldn’t wait another 2 weeks.  My biggest fear was that he had pulmonary vein stenosis once again.  This is what caused us to have the last pop-up open heart surgery.  unfortunately, if this does happen to Logan again we will most likely have to put him on the transplant list.   I was A WRECK waiting for this echo.  I mean really a complete nervous wreck. 

 Luckily Dr. Patel was able to squeeze us in fairly quickly.  Once we got there the nurses immediately commented that he looked bluer (thank you this is what I have been saying – Mom’s know these things) and once his pulse ox was taken it became very apparent, his oxygen is now around 72-73 instead of 80. 

(watching Elmo while getting his echo done)

Long story short Logan heart still looks good.  There is NO pulmonary vein stenosis that is visible.  His last sutureless repair on his pulmonary vein stenosis still looks excellent, his Glenn looks great, his valve is still holding up.  The only thing is that he still has relatively small pulmonary arteries.  So most likely because his pulmonary arteries are on the smaller side blood is finding alternative paths to travel down i.e. collaterals.  Heterotaxy kids are known to have abnormal vasculature so this crazy collateral growth is more common in kids with heterotaxy.   But keeping in mind the perspective that he could have had pulmonary vein stenosis, I was hugely relieved.  I mean collaterals….come on,  that’s just a cath fix. 

So the plan right now is to do nothing until Logan’s PO (pulse ox or oxygen saturations) drops further he is going to need a cath to coil more collaterals off.  This poor baby’s chest is just full of platinum (that is the metal used in coiling) his chest x-rays look really bizarre with over 25 metal coils in there right now.  I can’t imagine what some doctor one day is going to think when they do a chest x-ray and they don’t know about him. 

And then there was the G-Tube drama.  I just can’t get over how something that is typically no biggie in 99% of population quickly becomes so complicated and life threatening to a child with heterotaxy.  It was a one situation that clearly illustrates what Logan is going to have to struggle with for the rest of his life.  So to begin with, the pediatrician (who by the way- should we win the award for best pediatrician EVER!!!) had set up a conference call between Dr. Patel (cardiologist), our GI doc, myself, and him to discuss the big picture plan for Logan and to go over different contingencies (this phone call was one of the most helpful things we have had during Logan’s care and with a whole post in-an-of-itself) but one of the unanimous decisions that was made was that Logan needs a G-tube put it to help him gain weight. 

You would think that this would be a pretty straightforward and simple task to get accomplished.  Well, not for a heterotaxy child.  As it turns out his mixed up abdominal organs make placing a G-Tube much more risky.  Because Logan has a small misplaced stomach and a hiatal hernia he is at a very high risk for aspirated milk into his lungs. Because Logan is asplenic and any major infection could kill him the last thing we want is milk sitting in his lungs and causing an infection.  So to avoid this risk a fundiplication surgery would also have to be done. 

(fundiplication illustrated)

Basically wrapping the top half of the stomach around the the bottom half of the esophagus. 

*Excerpt taken from WebMD.com

How Well It Works

Studies show that laparoscopic fundoplication improves GERD symptoms in about 6 to 9 out of 10 people who have the surgery (depending on how experienced the surgeon is). But no studies have proven that laparoscopic fundoplication surgery is effective in maintaining healing of the esophagus over  the long term.¹

• A successful surgery does not guarantee that you will never have symptoms again. Some studies show that only about 1 out of 10 people who have fundoplication surgery done by an experienced surgeon have symptoms come back in the 2 years after surgery.² But there isn’t much research on how many people have symptoms come back after more than 2 years.
• About 2 or 3 out of 10 people who have surgery to relieve GERD symptoms have new problems (such as difficulty swallowing, intestinal gas, or bloating) after the surgery.² These new symptoms may or may not respond to treatment with medicines.

Risks

Risks or complications following fundoplication surgery include:

• Difficulty swallowing because the stomach is wrapped too high on the esophagus or is wrapped too tightly. This complication may be more likely to occur in people who receive fundoplication surgery using a laparoscopic surgical technique.⁴
• The esophagus sliding out of the wrapped portion of the stomach so that the valve (lower esophageal sphincter) is no longer supported.
• Heartburn that comes back.
• Bloating and discomfort from gas buildup because the person is not able to burp.
• Excess gas.
• Risks of anesthesia.
• Risks of major surgery (infection or bleeding).

 

All I can say to the above information is NO THANK YOU.  Logan has enough problems as it is.  And to do a surgical procedure for aspiration which may or may not even happen and potentially end up with a child who can’t swallow?  Not to mention the fact that some studies are showing only a 60% success rate?  And these risk are actually very minor in comparison to the major risk would be how Logan’s heart would handle such a large operation.  So needless to say,  Dr. Patel and I had a long talk about this and decided very quickly this is not the path we are ready to embark on.  So after countless hours on the phone talking and discussing and go back and forth between the pediatric general surgeon, the GI doc, Dr. Patel, the pediatrician, and myself.  We all settled on the fact that the once unanimous decision to have Logan get a G-Tube is now a resounding NO.  

  We are very lucky to have such an experienced and insightful pediatric general surgeon on our team.  He was a surgeon at CS Mott’s in Ann Arbor MI (one of the nation’s top Pediatric Heart Centers) before coming to the Cleveland Clinic and has tremendous experience with him.  He has experience with heteortaxy kids and has seen how quickly things can ‘get messy’ with them. 

A little side note here on second opinons……GET THEM.  This whole situation clearly illustrated the importance of finding a surgeon with actual experience with the type of illness you have.  I have spoken with 2 general surgeons and 3 GI docs to get a team I felt comfortable with. 

So after I had finally excepted that Logan was going to get a G-Tube I began picture him growing, and starting to sit up, and develop at a much increased pace and I started to get excited about the idea….until it was pulled out from under me. 

As Logan is quickly approaching the one year mark, I have been particularly emotional.  It is so much to take in, where we have been in this last year, and the road ahead as well.  The other issue with his 1 year mark  coming up, is that I have been avoiding calendars, timelines, charts, ect… in hopes of not having to worry about the comparison.  The comparison to where he is and where the average child is.  It is heartbreaking to see a baby almost a year old just start to have enough strength to hold his head up and for my own piece of mine I block out all the comparison charts and just accept him for him.  With his birthday looming it pulls me out of my world and into The 1 Year Old World.  The world of 1 year olds is crawling, walking, talking, waving, peek-a-boo, babbling, clapping, eating, sitting in a high chair, ect…. Logan can’t do any of those things.  In terms of physical strength Logan is a 3 month old.  This has been so tough on me that I have even considered canceling his B-Day party. 

 

I have come around though and accepted that Logan is very special and been thru a lot and it would be a shame not celebrate his life, because even though he is very small and weak, he has fought battles larger than most of us fight in our life. 

Logan’s birthday party is open to anyone in that would like to celebrate his life with us. If you are interested in coming on Logan B-Day Party which will be on Sunday June 5 please leave a comment with your email address and I will give you the details.  I look forward to meeting some of my fellow heart Mom friends that I only know thru words.

Happy Mother’s Day.

We had a crazy emotional up and down insane week with Logan. 

So emotional I haven’t even had the energy to write about it here.

Maybe tomorrow. 

But I wanted to wish everyone a

especially to my fellow heart Moms and other Mom’s of special needs kids because it is a bumpier road and a much trying path we travel as Mom’s.  I also want to thank my heart Mom friends for their unbelievable amount of support they have giving me this year. 

I know I have said it before but TRULY I don’t know how I would go on without you!!!

Love you all so much.

Confused.

 

So we met with the second GI on Tues. and without boring you with the details I feel much more comfortable with the GI doctor at the Cleveland Clinic.  He sees two other Heterotaxy patients and he is interested in kids with congenital heart disease.

I was concentrating so hard to take one of those phone camera pictures I ended up looking angry and I think I was squashing Logan! LOL But that is us waiting in at the GI docs office.

I am also very confused because the last week Logan has eaten very little.  I don’t understand why he all the sudden won’t eat.  After a couple of days of putting the Duocal in his formula he figured out there was something in his formula and decided that he was even going to drink much.  (picture me throwing my hands up in the air right now!)

(he is going to be a thumb sucker!)

So you can imagine my complete and utter shock when I called a weight gain in to his GI doc and he was happy with the GAIN??? What??? How could he have gained.  So when the new pediatrician called to check up on him I explained that I was shocked to see Logan gain weight because of how little he was eating.  His first inclination was that Logan may be retaining fluid and he called Dr. Patel to speak with him about it. 

Another thing that is very confusing to me, is that Logan has looked bluer to me ALL week.  His color just doesn’t look good.  I had the pulse ox machine on him yesterday while he was sleeping and it said he was 74-77.  Why is it down? I don’t understand.  He is still breathing heavy, now he looks bluer, and he won’t eat.  I am very frustrated. 

You can’t really appreciate his color unless he next to someone else.  So I put my hand in this picture to show you the color difference between me and him.  Right after his last surgery his color looked really good.  I don’t understand what is happening, is this collaterals again? Here is another picture of him laying besides his brother, just to illustrate the color difference.

(Smiling in his sleep!)

I also, have been thinking a lot about his first birthday (which will be on June 6th) Instead of being happy about this milestone I am sad.  I am sad for Logan.  I am sad that at almost 1 year Logan can barely hold his head up, can’t sit up, can’t roll over, doesn’t wave, barely babbles, doesn’t play peek-a-boo.  He has been thru so much in the last year and I just thought we would be further along than this.  Instead of moving forward I feel like we are stuck.  Stuck with this low weight, stuck with heavy breathing, stuck with a low PO (Pulse Ox number), and stuck with developmental delays.  I am so frustrated and confused.  And can’t help but think, am I doing something wrong?

His rectal problems have subsided that is the only good news of the last week.  Prolapse is gone and he has had no bleeding all week.

(Big brother Ethan on Easter!)

The Gastroenterologist.

On Tues we saw Logan’s gastroenterologist.  I was NOT excited about this appointment for two reasons.  One being I felt very blown off by him in the last couple weeks and the second reason was that his main area is NUTRITION.   Thank goodness I got Logan to gain that pound when I did because ever since his last respiratory illness he has completely refused ALL food.  I keep trying about 3-4 times a day to feed him hoping he will just snap out of these aversions….nope.

Not a chance. 

He lifts his hands to his mouth, squeezes his lips closed, and whines.  He wants nothing to do with eating. 

Ahhhhhhhh………………..

If only he knew what the alternative was…..

So we started off by clearing the air, and I told him that he was a very hard man to get ahold of.  I explained what happened and he kind of shook his head  “from now on you call me, don’t talk with Fellows or a nurse you call me.”  We worked out a plan for future  situations and moved on to the next big elephant in the room.  Logan’s weight. 

L

Logan is way below the 1% mark for weight.  If you can picture this I would say he is about

-50% on the weight chart.  (Thank god, I packed that pound on him when I did.)  After going over various options he said he wanted to speak with Dr. Patel.  So while he spoke with Dr. Patel I met with his preferred dietician.  She did all the calculations that they do, ideal body weight, calorie consumption, daily needed calories, ect… Turns out for Logan to just get on to the weight chart at around 1-2% he needs to weigh over 2 more pounds.  I told this nutritionist all of the things we have tried and failed at…. increased calorie formulas, thickeners, rice cereal, ect… I explained how there was a one two-week period where he ate and I fed him very rich food and he gained a pound.  She had one more idea that we hadn’t tried yet….

Supposedly this ridiculously expensive can of overpriced cornstarch, is supposed to add undetectable calories to formula.  It is not supposed to change the flavor or texture but it is supposed to ass 14-28 per bottle feeding.   Then the doc came back into the room with this….

It is ALL TO familiar to us heart Mom’s but to those of you that have the privilege of not knowing this an NG tube.  A nose to stomach feeding tube.  He said that he really wanted Logan to just have one now but the hospital policy has changed and now it is very complicated to give a child an NG tube.  The nurse has to do, and then a chest x-ray must be done, home health care must be set up…. So instead he said that he would give the nutritionist 2 weeks to work her magic on Logan but at the end of that two weeks if Logan had not gained 4 oz per each week his recommendation was going to be a feeding tube.  He said that he wanted to start with an NG to make sure that his stomach and GI abnormalities could handle the increase in amount and if it does then he wants to put a G-tube (a surgically placed tube in the tummy).  He said that at Logan’s age and NG tube was not a good long-term solution anymore. 

We also discussed Logan’s rectal prolapse and his rectal bleeding.  He said the prolapse is just a nuisance but nothing serious and that the bleeding was not concerning unless it was dark-colored, had clots in it, or was happening very often.  I showed him the big tear and he just grimaced.  Poor Logie….

So we are now on a frenzy to get him to gain weight.  I do have to say that  I am getting a second opinion from another GI specialist this coming Tues.  This was a doc that was recommended by the pediatrician so I thought I would give him a try too.  I am sure that he will have similar recommendations but if I like him he would be more convenient to get to.  Going to the Cleveland Clinic is a hassle.  Parking is so expensive, traffic is horrible, and the hospital is just Mammoth, its like its own city. 

The thought of putting Logan thru another surgery right now is just gut wrenching.  I am really hoping that he puts some weight on.  I don’t understand why he won’t eat??? Its so simple…. Please baby just eat….

Today we are off to see Dr. Patel (the cardiologist).

The Pediatrician.

So I decided to start on a search for a new pediatrician.  I really need a pediatrician that is going to be more proactive and confident in Logan’s care (as well as an office that doesn’t routinely put me on hold for over an hour….) I also decided that I would search out a private practice.  Private practices are a rare thing here in Northeast Ohio because we have 2 huge hospital systems (The Cleveland Clinic and University Hospital’s) that buy up all the practices around.  I do however think that a private practice could possible give Logan better care (Doctor’s don’t get bogged down with rules, paper work, protocol, politics ect…) So my search began….and ended very soon.  There are hardly ANY private practices anymore.  Crazy.  Anyway, I called and spoke with a bunch of pediatricians on the phone.  My search ended when I was telling a pediatrician that Logan is about as complicated of a kid as you can get.  His response ‘Thats okay I just wrote the book on that.’  Hahahaha I laughed and said ‘yeah I wish’  and he replied with ‘No, I am serious I just co-authored a book with the American Academy of Pediatrics about how to care for complex children.’…  So did I just hit the lottery or what???

Long story short Logan and I met with Dr. Lavin last Friday.

 

He walked into the room with this sheet of paper! See the title The Logan Spyker Team!!! I about fell out of my chair.  Getting good coordinated care is like the holy grail for families with complex children.  He said that he would like to set up a conference call with al lthe specialists to put a big picture plan together for Logan.  What??? Are you kidding me, was all I could think?  He had even taken the liberty of calling Dr. Patel ahead of time to get more information about Logan.  I got to tell you I was just in complete shock.  He had already ‘taken the liberty’ of calling other specialists that he knows of to find out if they knew anything about Logan’s condition. 

He spent 2 hours taking Logan’s history down (It is crazy that a 10 mo. old can have a 2 hour history to be begin with but that is a whole other post.) He was very thoughtful and knowledgeable and I feel MUCH more confident in his ability to look after Logan.  He was completely floored by everything we have been thru. When I told him about Dr. Del Nido having to reoperate bedside because Logan was crashing, he kept asking ‘wait this was just a months or so ago?’ I kept saying ‘yes’ this is what we went thru about 6 weeks ago and he just couldn’t believe it.

He didn’t do any real exam of Logan we just talked.  But he listened, he was amazed, and he seemed like he could really help us.  Thank you Dr. Lavin!

That was last Fri., yesterday (Tues.) we met with the pediatric gastroenterologist at the Cleveland Clinic.  But that is is a whole other story for a separate post.  I will post that update tomorrow.