Thursday, December 20, 2012

Cardiology and pediatrician appointments

This week, we had our first cardiology appointment since leaving the hospital. It was basically a follow up to see how things were going with Joshua and also to hear what the Stanford team had to say about the possible surgery.

We started out the appointment getting Joshua a chest x-ray.  Dr. Su (our cardiologist) used it to make sure there was no change in Joshua's heart size and to make sure there was no fluid building up.  Everything looked great.

Other good news was the oxygen.  Since Joshua seems to do pretty well on room air for the most part, he really doesn't need to be on it all the time (hurray!).  Basically, we watch his coloring and keep him on the monitor to watch his stats.  If we notice the stats going down, we can put the oxygen back on.  It is just nice that we are not so tethered down by the tubing all the time!!

The main thing we talked about with Dr. Su was what the team at Stanford had to say about Joshua's possible surgery.  In the short, they were very confident in their ability to complete this first surgery and have it be successful...VERY confident.  This was a relief to me since the cardiologists at Primary's seemed so unsure about it.  However, the surgeons at Stanford are world known for this type of surgery.  There are three things that they would do for this surgery:

1) Unifocalization of the collaterals and Pulmonary Artery:  This means they would take all the collaterals (the "veins" basically doing alot of the work the pulmonary artery should be doing) and the very weak pulmonary artery and putting them together.  This would lower the pressure in the lungs.

2) Create a connection between the ventricle and the pulmonary artery.   One thing they are going to try and accomplish with this is strengthening the existing pulmonary artery.  By pumping more blood through it, the hope is that the tissue will strengthen.  This would be important if the collaterals ever started to shrink.

3) Finally, they would fix the total anomalous venous return.  Right now, Joshua's blood coming back from the lungs to the heart is taking a very round about way.  The surgeons would create a shorter pathway.

We are still trying to decide if surgery is the right way to go.  We still need lots of prayers in our behalf for that.  I am struggling with figuring out whether my feelings are Heavenly Father or if they are just me being an over-protective mother.  It is difficult to think about putting Joshua through surgery when he seems to be doing so well.  It is hard to think about how much he would have to go through if we went that route.  However, it is really hard to think about him getting worse and knowing there was something we could have done if we had acted sooner.  It is a difficult decision.

Anyway, we also had Joshua's 2 week well-child check with our pediatrician.  I can't tell you how wonderful our pediatrician is!  I feel so blessed because he has worked with lots of children with heart conditions and really understood the basics of what we are dealing with.  I was excited when I didn't need to explain exactly what all the diagnosis were...he already knew the implications of everything!  He is also wanting to follow him closely to be sure he is gaining the weight he needs to.  Joshua has not gained any weight since leaving the hospital, so we have adjusted his feedings (increase calories) and we will be going in for a weight check each week for the next month.  Other than the feedings and weigh issues, Joshua looks great!  Again, I am so excited to have a pediatrician I can trust!!

To close things up today, check out this cute picture I got of our little man!! Smiles already!


  1. I absolutely love this smile! Can't believe it's so early! Our prayers are with you and your family, and I really hope you have a great Christmas with lots of miracles. I can't think of anyone who deserves them more than you guys!

  2. Hooray for no oxygen!! I am also thrilled to hear that he is such a strong candidate for the unifocalization. I am glad you connected with Corinne on IHH since her little guy Asher has had some serious similarities in his repair. I understand your fears in putting him in for surgery, especially when it seems like he is doing so well right now! I can assure you though that babies and kids are so incredibly resilient. When Grant had his Glenn, he was pretty miserable for the first three days, but on day four, we had to laugh at him smiling at everyone who came to his room and he would blow bubbles at us all because it made us laugh. He was home seven days after a major open heart surgery and the energy it gave him and the improvement in his coloring was really apparent to me. Good luck making those decisions and remember that faith and fear cannot coexist. We pray for you every day!


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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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