Tag: Dr. pedro del nido

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.

Surgery Date.

So we got the call today.  The call from….scheduling.  I knew this day was coming.  But to hear a date.  An actual pre-op, cath, and surgery date has literally made me sick to my stomach.  The worst part…we have to be there June, 8th….his birthday.  It’s like a sick joke.  Having a very very hard day today.

Not to mention he has been very very blue this entire week.  I thought to myself thank goodness we are going to be in Boston in a few weeks.  Then to find out this afternoon it’s not till June.

I haven’t wanted to Pulse Ox him (check his O2) because honestly, I don’t want to know.  But I thought since now it was going to be so long before his surgery I would look.  Ugh.Ugh.Ugh.  It said he was 65-70.  I haven’t seen the 60’s in so very long.  I feel sick.  I rarely have a pity party for myself because Logan is the one that bares everything, what do I have to complain about? But today, I have fallen into self-pity, anger, frustration, and sadness.  I am so pissed off that Logan has to be cut open again.  It’s so unfair.  So very very very unfair.  I am at the same time fully aware of how lucky we are to live in a time and place where he can have access to the best care, I know all that.  I just look at his sweet little face and his silly hair, and I just want to take his place so bad.  I wish I could just go thru this for him.

I told our pediatric cardiologist when I was still pregnant that my absolute worst nightmare was to get him to be 2-3 years of age and then lose him.  We can’t lose him now.  I am so scared.  Absolutely terrified.  The only relief that I feel in all this is that we Dr. Pedro Del Nido.  He could not be in any better hands.  That is what I hold on to.

There are so many scary things about the Fontan.  I don’t even have the stomach to get into right now, but it’s not just the surgery, there are all sorts of complications that can happen from the Fontan that are awful.

Just a really crap day.  I had no clue it would be so upsetting to get an actual date.

The emotional stamina it takes to get thru all this is just staggering.  I feel so beaten down.  I feel like I have been punched, kicked, thrown in the street, drove over repeatedly by a dump truck…and now someone is saying to me, ‘hey, get up, we have to go climb mount everest now.’

I rarely do posts like this, I try to keep strictly to the facts about what is going on in our life.  But this is the facts of our life.  I was explaining to a friend of my how precarious Logan’s life is.  I said its like being an Olympic Ice Skater.  I feel like for the past 2 years we have landed triple axles, and now we are coming up to the last one….

The amount of time, research, and ABSOLUTELY meticulous care it took to get Logie to wear he is right now would really surprise most everyone.  Logie didn’t get lucky, I fought like a crazed lunatic, to get him to the best surgeon/hospital that I could find that could fix him.  I was told twice Logan needed surgery at a different hospital and only because of the meticulous research I had done, did I know to say NO to those surgeries.    It’s because of me that he is alive.  I know that and everyone tells me that.  Well, what if I am missing something now?  What if I didn’t read some new research?  What if there is actually a center in Asia that could do better?  What if we waiting a year or two more and there is some new technology and he wouldn’t need the Fontan?  What if that surgeon in California that is growing stem cell arteries could do something for him?  It is so much pressure.  So so so much crushing pressure.  I feel at my absolute very weakest and I am being asked to perform my last triple axle…. I am skating around that turn, slowing down to prepare…..

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.

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…) 
http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=health/2011/12/16/pkg-saving-baby-pierce.cnn
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.