Chapter 24: Oh the Places We Will Go: Cath Lab Edition #2

Alex tolerated the procedure well. The left pulmonary artery grew a little bit bigger since the placement of the stent in August. There was a small area of narrowing within the stent, so in order to resolve this the doctor decided to place another stent inside the original one. They will have to keep a close eye on the further growth of the left pulmonary artery. Post procedure, Alex struggled to lay flat for the 4 hours, as we expected. He has been very sleepy since getting out of the procedure this afternoon. Hopefully, he will be able to get a good nights sleep. He will have another lung perfusion scan in the morning to check the flow through the artery. Thank you all for your continued thoughts and prayers. We know each and every one helps Alex along his journey.

Love,

Bobby, Erica, Ben, and Alex

Brother of a Heart Warrior

I Got This!

Please, no pictures!

Chapter 23: Oh the Places We Will Go: Back to the Cath Lab

We will be heading to the cath lab tomorrow as long as Alex stays healthy! He has been out of daycare since the end of last week in hopes to keep him healthy. He had a lung perfusion scan last week which showed decreased blood flow to the left side again, similar to what it was before the stent was placed. So they plan to go in and assess everything, but he will most likely need some type of intervention. Hopefully all of the other measurements look good!

After the cath he will need to lay flat for 4-6 hours. Hopefully he stays a little more sleepy than last time. We are both dreading that 4-6 hours now that all he wants to do is move, move, move!

We don’t have a time yet for the procedure, but we will be sure to update some time Thursday evening once we get settled.

We can’t thank everyone enough for all of the continued thoughts and prayers.

Love,
Bobby, Erica, Ben and Alex

P.S. don’t forget to wear your Team Alexander shirts tomorrow!

So close to crawling!

Chapter 22: Happy Nine Months!

We can’t believe another month has passed by! Our little peanut is now 9 months old! He has grown quite a bit in the last few weeks, both in size and in his development. He is now 13lb 11.8oz! Finally breaking past the 12lb mark, only took 9 months! He’s army crawling everywhere if you let him, getting into everything he’s not supposed to. His favorite things are Ben’s toys. He has found a new love for Elmo and he gets very excited at the sight of him, even when on Ben’s pajamas. He continues to try new foods, most recently blueberries which he loved. He really does love Ben, always looking for him and laughing and smiling no matter what he does. We can’t wait to see how their bond continues to grow.

The most recent cardiology appointment went well. The stent is still in place and there is some flow. The question is how much and when do we need to go back in to open up the stent. We just heard back from his cardiologist and they would like to get him in for a cath in the next few weeks. We were hoping to hold off until some time next month but it looks like we will be back at CHOP soon.

We hope everyone is staying warm in this cold weather. Thanks for your continued thoughts and prayers. We will keep you updated once we get more information.

Enjoy the pictures from Christmas, New Years and other adventures over the last month.

Love,
Bobby, Erica, Ben and Alex

Alex's first train ride! It was cold!!!

Train ride with Santa

Heart warrior shirts!

Using his new cups!

 

Happy New Year!