The Journey of a Sweet Little Boy and His Special Heart

Sunday, December 5, 2010


After 2 1/2 months of waiting for test results, doctors opinions, second opinions etc. we are finally making some progress.  We are planning on taking Logan to CHOP (Children's Hospital of Philadelphia) the first week of January for his next surgery.
This decision has not come easy.  Brad and I have researched everything we know how to research.  We have talked to ANY doctor that will talk to us!  We have prayed and been to the Temple numerous times and what it comes down to is this is what feels right. 
So why not Utah is what everyone is wondering right?  Let me try to explain... The surgery options presented to us by the surgeons here in Utah:  The Glenn procedure NOW followed by the Fontan when Logan is 2 or 3.  This would shut his right heart down completely so he would only be functioning on 1/2 his heart.  This option would then require a heart transplant down the road.  Not to mention a very limited lifestyle activity wise along with risks of Kidney and Liver problems.
From the very beginning we have been optimistic and hopeful that Logan would be able to at least avoid the Fontan because his right ventricle, although small, is still adequate to function some.  So when we got the surgery plan back from the doctors in Utah we were devastated to say the least.  My heart sunk, and I knew if this really was the road we needed to take we would need to hear another surgeon say there was no hope for his right heart.  We sent his case out to 2 of the top surgeons in the country at CHOP and Stanford hoping they may have more experience with anatomy like Logan’s, and also consulted with another cardiologist at John Hopkins.  I needed to hear at least 2 doctors agree on the same thing because we were getting different opinions from the doctors here. 
We heard back from CHOP within a week, and as Brad relayed to me what the doctors there had suggested for Logan's care I wanted to jump for joy.  They felt like they could have him functioning on his right heart.  They would repair his VSD (the hole between his ventricles), and if the tricuspid valve is functioning enough they could possibly do a 2 ventricle repair, but likely not less than a 1 1/2 ventricle repair.  This is what we have hoped and prayed for.  We tried not to get our hopes too high though because again we needed to hear at least 2 doctors agree on the same thing.  Stanford took their time getting back to us (an entire month after they reviewed his case), but they came back with the same surgical plan as CHOP.  So we have 2 surgeons agreeing on the same thing... GLORIOUS! 
Stanford makes more sense logistically speaking, but CHOP feels right.  So we are preparing to travel across the U.S. to give my baby's heart the best chance we can. 
There is still a lot that can happen in a month.  We have a sedated 3-D Echo scheduled for Thursday that will give the doctors a better look at how his tricuspid valve is functioning and if it will be problematic with the CHOP/Stanford surgical plan.  We also need some other things to fall into place, but for now this is the plan.  It feels good just to have a plan!
Reality sinks in a little more every day.  I panic when I think of leaving Ashlyn and Tanner for anywhere from 2 weeks to a month…or more.  I know it would be SO much easier to stay in Utah and be able to come home and be close to family.  But I also know this is the right thing for Logan. 
THANK YOU everyone for your prayers and concern for our family.  PLEASE don't stop praying.  I KNOW it helps.  I will keep you posted on our plans as they become more definite.


  1. Oh I am so glad! CHOP will be great. Stanford would have been awesome too, but you have to follow your gut! Doesn't make you mad at the surgeons who only half try to get an answer for you? It's like, yeah a full repair may be harder, but it is BETTER! Anyway, I am excited that you at least know your next step!

  2. Oh, Heidi! Your blog makes me cry! I am glad you have some answers and feel good about this decision. Logan is in my prayers. He is such a sweet sweet baby!

  3. I forwarded your message from the IHH Forum to some other Heart Moms that I know that have had experience with CHOPS to help answer your questions.
    Let me know if there is anything I can do to help you guys.

  4. Whoo Hoo a plan! Do you have a date? I'm so glad you were able to find some agreeing professionals. What can I do? let me know. We will keep you in our prayers!

  5. Heidi,
    We too left Utah for CHOP this past July. You are welcome to read about our experience there on our blog:
    if you would like to chat about it or discuss the many logistical questions in detail feel free to send me an email and I will send you my phone number:

    CHOP was the best decision for us. I feel so unbelievably blessed to have been led there--it just felt right to us as well.

    I look forward to helping you prepare in any way I can.