Some Bad News about the TAPVR.

Well, we had a pretty crappy week around here.  After our last appointment with Dr. Patel I was still not convinced that his Pulse Ox (oxygen saturation) was 75.  So I took matters into my own hands an decieded to get a hospital grade pulse ox machine.

 

AND GUESS WHAT IT SAID??? It said his oxygen saturations were between 65-70.  I knew it.  We tried his pulse on his foot, on his toe, on his hand, everywhere.  We were much more thorough than the nurses could have been in a 10 mn. exam.  I called and let Dr. Patel know, and had another appointment the following week.  This time when the nurses took his pulse ox it was 68.  Much more in tune with what we were witnessing at home.  Dr. Patel did an echo and this is where we found out the problem. 

There is scar tissue growing at the site of the TAPVR repair.  TAPVR (Total Anomulous Pulmonary vein return) is when the 4 pulmonary veins aren’t attached to the back of the heart like they should be.  Instead they join together in a confluence behind the heart.  Dr. Del Nido sliced this confluence open and stuck it to the back of the atrium so that they are now attached to the back of the heart.  The problem that Dr. Patel found on Tues. was that there is scar tissue growing at this site and obstructing the flow of oxygen rich blood to the lungs.  I was very upset to hear this news.  This is not a completely unexpected place to be (5-10% of all TAPVR repairs grow obstructing scar tissue) but it definitely isn’t a place I would like to be.  Luckily, so far, the scar tissue is only in the confluence and not in the veins.  If the obstruction was in the veins, there would be a lot fewer options, and it would be much worse news.

Currently we are waiting for the team at Boston to review the echo and come back with their recommendations.  Dr. Del Nido did say that most likely they will need a cath procedure done to determine the amount of scar tissue that has grown and then it can be determined whether Logan will need another open heart surgery or if something can be done in the cath lab. 

On the feeding front we are doing a lot better.  Logan is eating about 1 jar of baby food split over three feedings a day (this doesn’t sound like much, but this is greatly improved from the just a couple of spoonfuls he was taken a few weeks ago.)  He also loves eating baby biscuits all by him self.  The more control he has with the feeding the better it seems to go.  Even when spooning him baby food if I occasionally give him the spoon and let him put it in his mouth, the happier he is.  He definitely doesn’t like to be forced-fed.   Here are some adorable pictures of him with a rice biscuit (he LOVES these.)

Here is a picture of Logan’s scar right now.  I think it looks pretty good actually.  The other scars you see are from the 2 chest drainage tubes (those allowed blood to escape his chest after surgery) and the other smaller holes are from the pacing wires (in case his heart couldn’t pace itself after surgery – he never needed them) and from the arterial lines.  The other thing that is very interesting about this picture is that the prominent blue veins that you see are the collaterals that are growing and giving him problems.  Those veins are taking oxygenated blood away from his lungs to the lower half of his body.  This is the main reason his O2 levels aren’t higher.  It’s really bizarre to be able to witness them growing.  Every week I see a new one popping up.  He has a bunch on his upper right shoulder. 

 

I am getting very anxious to hear what the team at Boston is going to recommend.  I HATE not knowing what the plan is….

9 thoughts on “Some Bad News about the TAPVR.”

  1. I’m so sorry you got this news. I know how hard it is to get news you do not want to hear. Good for you for doing your sat check. I hope you team of docs are able to help him while avoiding OHS. Heart hugs to both of you.

  2. What great pictures Kristen – you are so creative on figuring out how to get him to eat. I know we will hear soon on the TAPVR and the Drs will have the best solution. Love you all.

  3. I’m so sorry this is happening. Logan’s path is so eeriely similar to my C. I remember feeling a lot of the same things as you have described. I noticed you said Logan is being considered for his Fontan at 18mos and I am curious why so young? Thinking of you. Logan looks awesome.

    1. Dr. Del Nido wants to do the fontan early because of his AV valve. They would like him to get his fontan before that valve ‘gives out’ again. Once it does we could be in trouble so they just being cautious. I def. don’t ever want to be in a situation where we aren’t a fontan canidate. So your baby had TAPVR obstruciton after surgery too? What ended up happening? Did the reoperate?

      1. Unfortuantely, yes, they had to re-operate. After making it to her Glenn with no surgery and then doing her TAPVR repair and Glenn in the same surgery and thinking we were good until her Fontan, I was crushed that she would need another OHS just 5 short months after her 1st OHS. C’s obstruction was thought to be scar tissue around the (forgive my spelling) anastomosis (the connection between the confluence and atria) but turned out to be membrane. I distinctly remember the convo with the cardio doc after the cath and him showing me the obstruction and assuring me it was not the veins that were obstructed (thank goodness for small miracles). She did great with her 2nd OHS but she spiked a fever a few days later and went into severe atrial fibrillation due to her atria being resected twice. C pulled through and is doing well now. Thanks for answering about the Fontan so early. Thinking of you all.

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