Big Week For Logan

So Logan had a huge developmental week! Just in one week, Logan started saying HI, clapping, and sitting up unsupported!  It is fantastic to see him developing and he is so ecstatic to be able to do these things.

He also tried a few new foods which is encouraging.  He typically only takes a few small bites but his willingness to at least try makes me very happy.

Trying some Ice cream…

Eating some french fries….

Logan continues to have his RSV shots monthly (fun times….nurses coming to the house with big needles!)

He had a cardiology appointment yesterday. 

I am having massive anxiety about his next steps.  I am terrified of the Fontan surgery.  This surgery is going to connect his IVC (major blood supply to the lower half of the body) directly to his pulmonary arteries.  This way he will have better oxygenation to his lower half of his body.  Currently his top half (waist up) is oxygenating at about 80%.  His lower half is oxygenating at about 72%.  The other benefit to having the lower half connected is that blood that flows thru the liver gets into circulation.  This is important because there are enzymes in the liver blood called “hepatic factor” that help keep collateral growth in check.  We know Logan has the ability to grow very extensive and invasive collaterals if his vasculature is stressed so it is important to get this “hepatic factor” into circulation sooner rather than later.

(getting ready for his EKG, weight check, Pulse ox, and blood pressure)

Really angry about the EKG leads…he is starting to hate them. Typically he hates having the stickers taken off but now he just hates the whole process.

Took a while to get them all on because he pulled them back off so quickly.  We went with the stick’em on quick, cover with blanket, and distract with IPhone method!

Logan’s echo went well.  His PVS has not returned! (yay!!!) his Glenn is working well, his heart is squeezing well, his valve has no regurgitation (thanks to Pedro Del Nido, it had been severely regurgitating), and his pulmonary arteries grew.  although his PAs grew they are still small for his age.  They are considered mildly hypoplastic.  Not great news for his Fontan.  Dr. Patel wants Logan to have a cardiac cath done in early spring to check pressures and collateral growth.  We will have that done in Boston and then based on that data we will determine whether he is going to have his Fontan then.  More than likely he will.  BIG SIGH….hard to even think about him having another OHS.  The only positive aspect is that he is healthier than ever before.  He got thru tough surgeries while in severe heart failure. He is so healthy right now, so that can only make surgery go smoother. 

I will leave you with some more cute Logie pics….

Another fantastic Silly hair pic!!!

Getting ready for a bath…

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Christmas in Pictures

 

Christmas Eve

 

Big Bro Ethan!

My Mom bought this shirt for Logie.  Just in case everyone doesn’t realize, Children’s Hospital of Boston is part of the Harvard Medical School!  Ironically though, my Mother found this shirt in Florida!

 

 

Lego Madness

Christmas Morning

Logan and his bed head.  I think this has to be my favorite picture this year!  I love his silly hair.

Taking a bath because Logie keeps throwing up from all the Christmas Cookies.

On our way to Grandma’s house…

Just having the most fun with tissue paper!

Where is Logie?

Here I am!

Overall Logan did much better this christmas than last.  Last year he spent a total of 2 minutes because all the noise and all the people were so overwhelming to him.  This year he was much more comfortable being apart of the chaos.  Although, he did sleep almost 12 hours straight, which for a child that never sleeps for more than 2 hours at a time without eating was quite a long time. 

Last thursday Logan was supposed to have another cardiologist appointment.  After 3 weeks of severe sinus pain I succumbed and had to go to the doctor on that thurs.  Turns out I had a sinus infection and an ear infection.  I did pulse ox Logan the day of cardiology and he was 71 on his foot and 80 on his hand.  Our ‘next steps’ need to be talked about relatively soon as his ideal next stage surgery would be done at 18-20 months.  Literally makes me sick to think about having to do another open heart surgery on him. 

Hope everyone had a wonderful holiday and happy new year!