Wednesday, September 26, 2007

Sad day

Ian's breathing has been labored since his birth, which we had hoped would lessen with time. It persists, and so we took him for an echocardiogram this morning, which revealed that the hole in his heart had grown larger, causing too much oxygen-rich blood intended for the rest of his body to be channeled back into his lungs.

He'll need heart surgery to repair it. Probably within a week or so.

I'm not fond of the "life with a child with Down Syndrome is a roller coaster ride" analogy. This isn't a ride, and if it is, I want my money back.


Archie said...

Oh, man. Sorry to hear the news. We're thinking of all of you.

Karen said...

Sorry to hear that. I'll be praying for you all, especially for little Ian.

Leah said...

Oh Tom, I'm so sorry to hear the news. If it helps you to feel ANY better at all, you're dealing with one of the best hospitals in the country. The Children's Heart Clinic is one amazing group of people too! (We used to see Dr. Cebalka there, but she's now moved onto Mayo, so we switched to Dr. Baker.)

But it doesn't matter how good the doctors are, or how great the hospital is. The thought of your baby having open heart surgery (referred to as OHS) is scary stuff!!!

Angela has been through countless surgeries, but none of them heart related. I well know the feeling of handing your baby over and wanting to run away at the last second.

What type of defect does he have? Many are "routine" repairs. (ASD's, PDA's, etc.) and others are a little more complicated.

Your family will be in my prayers. I know the agony you're feeling right now. Unfortunately there's nothing anyone can do or say to make that go away.

Hugs to all of you.

Steve said...

Our daughter was born with DS and AV Canal and at a young age of three months she needed surgery. The cardiologists felt it was too early for her to have her heart repair surgery so they decided to give her a Pulmonary Artery Band which helped restrict the blood flow. This was not open heart surgery but was serious surgery. Her rib cage had to be opened and she was hooked up to breathing tubes, etc. This was the worst thing I had ever experienced. Seeing her hooked up to all those machines, etc, was heartbreaking. We spent another 6 weeks in the hospital, this time in Intensive Care because her lungs kept filling up with fluid. The cardiologist had to do 3 Bronchoscopies to clear her lungs. We finally got to take her home.

The next year was filled with lots of doctor visits (2 hours away), therapy services at home, etc. Thank goodness for the respite nurse who gave grandma (who was the caregiver at the time because we both worked) a break during the week. There were so many things we learned in the first year that I know I never expected to ever have to deal with. I decided to quit my job at th end of the end of the school year to stay at home with my daughter just to keep up with all of her appointments etc.

In Jan 2005 (while my wife was 6 months pregnant) Abbey had her AV Canal repair. It was a real success and she was only in the hospital for 8 days. To us, this was the most amazing thing. All of our other hospital experiences were so long and hard. This time she was bigger and stronger and she healed like a champ.

Be stong and keep praying. Trust me, you don't want off the ride and you don't want your money back!!!!!

Kim Ayres said...

As you know, Meg had heart surgery when she was 5 months old. We're incredibly lucky that we live in an age when heart surgery has made so many advances that it is almost routine for the doctors, even if it isn't for us.

The difference in Meg after she as over the surgery was immense.

I wish Ian and the rest of you all the best through this difficult time. My thoughts are with you.

Lori F. said...

So sorry to hear that news! Evan had an ASD/VSD repair of 2 holes when he was 10 months old. The surgery was very new at the time & considered quite risky but we were thankful for it. We'll be praying for you. (Hopefully that doesn't sound like an empty phrase at this moment, but one that encourages.)We'll be waiting for updates when you get the chance.

Tom said...

Archie: Appreciate the thoughts, man.

Karen: Ditto what I said to Archie, without the "man," of course:)

Leah: Always good to hear from your experience; and sorry to hear that Angela has had to endure that. I hope for the best for the future for both of you. Thanks!

Steve: Thanks! And I'm really sorry that your daughter (and family!) had to go through all that. But I am glad that you're able to spend so much time with her now (if you are indeed continuing to be a "stay at home dad.")

I wouldn't trade my little boy for the world. Most analogies fall short, but the reason I dislike the roller coaster ride analogy is because roller coasters are supposed to be fun. (I know, I'm being a little picky here. I'm not hung up on it or anything.)

This feels more like a sucker punch to the gut.

Kim: It helps to think that life will be better for Ian on the other side of the surgery. It is also a comfort to hear from those who have gone before us on this road. Appreciate the kindness.

Lori: Also sorry to hear about Evan. Man, I'm starting to feel like I've boarded a WWII Army hospital ship. When you hear about the "medical problems" associated with Downs, you always think it's someone else's child. When does this hospital ship dock for some R&R, anyway?

Thanks for the prayers!

Steve said...

I know you have been reading many blogs on the web about DS. Here is one I enjoy. She also wrote an article for Faith and Family Magazine I thought was good. Enjoy.

Anonymous said...

I'm sorry to hear Ian's hole has grown larger. I hope the surgery will come quickly and that the problem is resolved.

Tom said...

Steve: I stumbled across her site when I first started researching DS, but haven't spent much time there. I'll check it out.

Rebecca: Thanks for the thoughts; we're hoping that his life will be much better after the surgery.