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…

6 thoughts on “Big Week For Logan”

  1. Seeing these pictures and reading all that you write gives me encouragement for Pierce. I do not understand all this Heterotaxy Syndrome stuff but being able to read what you post helps alot! Thank You!! 🙂

  2. I’m wondering what he is weighting more and how tall he is… I’m do glad to hear he is improving and learning…. Little and big milestones are so joyful with these little ones…

  3. He is so darn cute and getting to be such a big boy. I am so happy to read all his development…he is doing amazing. I can’t wait to see you all again soon.

  4. Hi Kristen, Logan looks awesome..Your doing great with him sweetie.. I know your scared about surgery…I can’t blame ya..remember to take one step at a time and try not to let your mind wonder and believe me I know what your saying…”yea, easier said than done”…know that my thoughts and prayers are with you and your family…P.S. I love his hair…Tims’ did that a lil too. I try and comb to side and I’d blink and it was back stickin straight up..hehe..too cute…((Hugs)) to Logan and family…
    I’ve also got a website on wordpress…its http://www.lt4swanchd.wordpress.com/ Your welcome to take a look…if you have any suggestions please feel free to commnet.
    Laura C.
    Proud Mom to SWAN & CHD Angel, Timothy

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