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.

9 thoughts on “Fontan Update”

  1. We miss you guys so much. Logie is doing remarkable…I am glad you have good news…even if it is mixed with not great news. He is doing better than Hope and she is in preschool…with the germy kids. I know calling Pedro is going to be rough, but I really hope you all are here until after the holidays…after the winter would be best. You all are always in my thoughts.

  2. If you ever want to talk please email me…my daughter is now 8 months past her Fontan and still sats low and is on O2 all the time. We tried the sildenafil as well but it raised her heart rate too much and with her atrial fib and tach I did not like her heart rate being that high, espceially when it did not seem to help that much. Cardio is talking about putting her into a cath after the beginning of the year to see about closing her fenestration. I know your frustration and coming to acceptance. So, again if you ever want to vent, email me and we can compare 🙂

  3. I am almost 36 weeks pregnant. At our 20 week ultrasound we learned that our daughter’s stomach was on the right side instead of the left. This launched us into the world of heterotaxy. Like you mentioned here, I have been relentlessly trying to research and understand. The most frustrating part has been finding doctors and hospitals that have experience with these children. My hope has been to pull together the resources for people so that on top of receiving such devastating news, parents don’t also have to deal with the stress and frustation of just trying to find the best care for their kids. I live in Virginia. I am scheduled to be induced on Dec. 27th and am still struggling with the decision of where to have her. Like you, I have found that some hospitals and physicians are more interested in my baby as a resume builder, than with providing her with the best care. It is infuriating. I’d love to help get this resource up and running. I am terrified. There will be so many unknowns until she is born, but it would have been so helpful to have had resources available to help us navigate through this whole process. I will say a prayer for Logan and for all of you who love him so much. Karen

    1. Hello, I agree very much with your analysis on institutions. Bottom line is no one will advocate for our children like we will as the Mom. Always trust your instinct and if something doesn’t feel right, it probably isn’t. Always err on the side of caution and get multiple opinions, and with kids this complex get to the largest program you can. These are not just heart kids but kids with multiple organ systems issues. Very highly complex. Please keep me updated! ~Kristen

  4. Thank you so much for your posts and your honesty…. always an emotional rollercoaster. We’ll take the good and the bad if it means the kids are happy~ We are still awaiting our fontan and its been helpful to get as much insight as possible. Prayers for your little man!

  5. Am a friend of a grandmother whose daughter has had a son with heterotaxy syndrome. Love your posts and am greatly encouraged with all that is posted . I have a 31 year old son who was born with SpinaBifida ,although we did not have blogs or Internet, I was fortunate to be connected with a great group called pilot parents. The parents we met ,who had children with varying disabilities,was a great source of information and gave us great strength as a family. Our thoughts and prayers are with all of us who have daily challenges for our precious children.

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