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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!

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

Logie in the Pool!

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Just wanted to share a quick video of Logie playing in his little pool!

He has been having so much fun with the nice weather we have been having.All of this exercise has really built him a little appetite too.  He is eating foods that he normally wouldn’t even try, he is loving mashed potatoes right now! We have a cardiology appointment this afternoon, just a check up, I don’t anticipate anything to have changed.  We are still looking at his Fontan around June 13th.  It is coming up really fast and I am trying my hardest to not dwell on it, but to just enjoy these last few weeks we have before surgery.  I anticipate that going thru this surgery will revert him back to the scared and timid boy he was just 6 months ago, so I am trying to get him outside and playing as much as possible. 

Here are some more cute pics…

First time in the sandbox.  At first he wasn’t so sure about the sand! Now he loves it and whines to go in.

First trip down a slide with Mommy of course! He loved it!

He looooooves to flip the pages of books and to be read to.  Ethan doesn’t have the patience to sit and read books, so I am loving being able to cuddle Logie and read books.  His favorite are Dora The Explorer books.  He is always so surprised to see Dora in books, he looks up at the TV and then back at the book, it’s too cute.

Still drinking out of a little baby bottle and scrunches his feet up like a newborn.  I am completely okay with this.  The bottle issue is not even on my radar screen as issues to worry to about.  It also is how I “secretly” give him his heart meds 🙂

 

I also wanted to remember Sweet Elise.  She passes away 2 weeks ago, and her loss was just devastating to me.  She has the same diagnosis as Logan and was born a couple of months after him.  Her Mom became one of my closest Heart Mom friends, and we watched in amazement as our two kids followed such similar paths.  This is a family that I have been in constant contact with for over 1.5 years.  Elise’s Mom Tessa, has provided me with so much support and encouragement thru Logan’s battles.  My heart is broken for Tessa and her family.

Elise went in to have a cardiac cath and her Fontan (third stage surgery), and never got extubated (breathing tube taken out) after the cath.  Her heart was too weak to go one to the Fontan.  Elise is Logan’s heterotaxy sister and she is greatly missed.  Elise is forever in our hearts….

                                       Remembering Elise

What is Logie up to?

Logan has made so many strides lately!  He is doing just terrific.  One of the greatest things that we ended up doing was hiring a nanny.  This was tough to do because its hard to turn over control, and it takes a lot for us heart Mom’s to trust anyone with our kids but it turned out to be the exact thing that everyone in our family needed.  It is allowing me to work more, which has been very good for my mental health, and it has introduced someone to Logan that he doesn’t associate with any of his medical issues.  Our new nanny has never given him meds, never seen him in the hospital, and never taken him to the doctor.  Logan trusts her! And the best thing of all is that he has started to eat for her!  it is very interesting because he still will not eat for me and he actually stops eating if I am in the room. 

He is verifying that this is all psychological and not a physical issue. So I am making a point of not asking this nanny to ever give him medicines or be involved the his health issues, because he trusts her!

I think that is has been fantastic for him to be around a caring person that he feels 100% confident won’t try to force him to take medicine, force him to put on a pulse ox, or take him to get boo boos at the doctor.  He has made so many strides since the arrival of our new nanny that it has made me realize how this whole journey has really affected him mentally. 

(love being read too)

Now that he is getting more nutrition he is able to do physically advance as well.  For the past few months he had been extremely frustrated because although he was mentally like a 20 month old, he was stuck physically in a 6 month old’s body.  Him being able to move and explore has really opened up a whole new world for him and he is so happy about it.

He is sitting up very confidently and has figured out how to go from sitting to laying and vice versa.  He is so so so very happy at this new ability.  He feels like a real person now!

With his new-found independence and strength, going to the cardiologist has gotten to be a bit more of a struggle.

(EKG and Blood pressure)

Last check up was good.  O2 is is decent (mid to upper 70’s) sometimes hitting 80 sometimes hitting 70.  He definitely looks blue when he is moving around and playing.  His feet get very blue, and the area around his mouth and eyes as well. 

He currently weighs 9.1 kilo (20 pounds) and is 30 inches in length.  He is the sweetest little thing you could ever meet.  I wish everyone could meet him. 

The last week we had a stretch of weather out of the blue where it was 75-80 degrees.  Logie had the time of his life.  Last summer his body couldn’t handle heat and he would just sweat like mad if he was in the sun. 

(he didn’t eat these apples btw….)

(we actually had to bring this picnic table inside because we couldn’t get him to come in without it)

Ethan is also enjoying Logan now that he is able to interact with him more.  Ethan almost has a bit of a playmate!

Still working on figuring out a surgery date.  Couldn’t tell you if its going to be April or June at this point.  I am hearing something different from everyone that I talk to.  Trying my hardest to figure all that out now.

Surgery Time

So, I have not updated in a long time. Well, actually about 6 weeks.  I have been spending all of my free time in organizing the new Heterotaxy Network website and forums, and trying to just decompress a little and enjoy the non-surgical months a bit. 

I found out that Logan needs to have his next open heart surgery, the Fontan, next month and I feel as though someone has just kicked me in the gut.  I knew it was coming and we have had many talks about being this spring, but to “next month” was very hard to hear.  So hard to hear and process I have needed some time before I could even discuss it. 

Logan needs to have his fontan surgery next month for a number of reasons.  His oxygen sats are mid 70’s and having this low of oxygen levels does not give him much buffer in case of illness.  Currently, his top half of his body via the superior vena cava is better oxygenated, but his lower half via the inferior vena cava in not connected and is not oxygenating well.  This is important for several reasons; 1. being that having his superior and inferior vena cava’s connected to his oxygen circulation will greatly improve his over all oxygen levels, and because when the inferior vena cava (IVC) is connected in, blood will begin to travel thru his liver.  Liver blood is very important for his hemodynamic (blood flow) stability because it has been found that there is a unique function that the liver play in the blood by putting special enzymes in it that help regulate your body’s ability to stop the growth of collateral veins. 

Everyone has heard of those stories of a man or women having a blocked artery only to find out that the body actually compensated and grew a new path around the obstruction.  That new path is a collateral vessel.  In those situations collateral vessels are beneficial to the heart.  But how does the body know when to grow collaterals and when not too?  Well, that is not completely understood.  What is  known is that there is a special role the “liver blood” plays in this process which is it stops your body from just growing the “new paths” continuously. 

For heterotaxy kids this type of “checks and balances” is essential because heterotaxy kids (for an unknown reason) tend to grow these “new paths” much quicker.  Again there are some instances where they could help your heart, but more times than not these news paths end up taking oxygenated blood away from the lungs.  The sooner that we can get his blood circulating thru his liver, the sooner he will get this “hepatic factor” into circulation. 

Lastly, the sooner we can get his bottom half into circulation his heart won’t have to work as hard.  When his heart isn’t working so hard there is a better shot at keeping his AV valve functioning well for a longer period of time.  I always knew that the repair that Dr. Del Nido on Logan’s heart was amazing, but the more I learn the more I realize how spectacular the repair actually is.  When Logan went in to have his first AV valve surgery his valve was a 4+ Severely regurgitating, and just barely functioning.  Currently, 12 months after his last AV valve repair (he has had 2) there is ABSOLUTELY NO REGURGITATION.  NONE. PERIOD. I am saying this in all caps because I want to emphasize this point.  I have heard many cardiologists and surgeons say that it is impossible to fix these valves. That no one (worldwide) is having luck repairing these AV valves.  Well, I just want to shout it from the roof tops.  My son is living proof that Dr. Del Nido at Boston Children’s Hospital is doing what the rest of the world is claiming is impossible.  He is repairing these valves, and not just to a manageable level, he is repairing them to a level of ABSOLUTE ZERO regurgitation.  I am even temped to post his echo online because so many doctors do not believe it.  If you have a child with an “unrepairable” AV valve, please seek the opinion of Dr. Del Nido at CHB. 

Anyway, sorry for the rant but I am so sick of hearing that it isn’t possible to fix them. It is.  But please…don’t think that just because Dr. Del Nido can do this repair, that any surgeon can if they just tried.  This is not the case.  This is a very specialized surgery that should be done by someone with  experience. 

Beyond the fact that Logan will need to have open heart surgery next month….he is doing fantastic.  He is so happy.  Seriously, this kid is SO very happy.  He is now 20 pounds (9.1 kilo) and is 30 inches in length.  He is over most of his trauma from the last surgery, and is willing to let people hold him, and his is willing to touch and explore new things. He isn’t terrified of every sound and movement anymore.  He is just loving life….which is one of the hardest things about this next surgery.  He was so traumatized for so long…the thought of him going back to being scared of everyone and everything is utterly heartbreaking.  Honestly, I have to just end this post right now, because just forcing myself to write this post is making me feel sick.  I did however, want to update everyone.  I will make an effort to do so more often, it was just nice to take a break from writing about all of this. 

Logan is not on the surgical schedule yet, but most likely it will be the 2-3 week of April.