Back on March 30, Allyn had an echocardiogram. Looking back, I'm really not sure why we haven't had one before given all of the issues. We waited on results for over a month. We emailed the doctor who put in the order just to touch base with him and make sure everything was okay. Because surely if something wasn't okay they would have been in touch with us right away.
These defects are putting a lot of stress on the right side of her heart. She currently has a very enlarged right side of her heart and the pressure difference between the right side and left side is 30 mmHg (normal is closer to 5). Additionally these defects cause slow growth, failure to thrive and increase sweating. These are things I have been talking to every doctor about since she was six (SIX!!!) months old. And never once did any doctor think to check her heart. We were always so caught up in her spine. I had high amniotic fluid during my pregnancy and we could never find anything. She had an elevated breathing rate post delivery and we never thought to check her heart.
I'm angry: at myself, at the doctors, at the world. I feel like someone should have thought to check. I don't know that it would have made a difference, but maybe it could have. But I'm reminding myself that is done. We have to move forward. We have to fix this. We came back from our appointment with a bit of a game plan but won't know more because unfortunately the hospital where we are seen is in the process of reworking their heart catherterization lab and there was a big cardiologist meeting in San Diego as we were learning all of this.
After a long drive back from the city (why are all of our appointments over with just around rush hour?) we came home to play outside and share the news with our families. I had to carry peanut around because she was wearing an ECG monitor for 24 hours and pissed off at the world about it. The boys "leveled up" in a game of water guns.
Oh, that monitor was not our friend.
So now I'm repeatedly reminding myself that now we know. Now we can piece together a game plan. One that provides her the utmost quality care we can find and heals her heart and gives her still very crooked spine a chance. I don't know if the two things are working together. But I'm trying to have hope that she has a heart cath that is able to get the necessary diagostics and they can repair the holes during the procedure and open heart surgery will not be necessary. The cardiologist reminded us that these are fairly common procedures. And we are strangers to common. But he did say her case was complicated so he would be reviewing it more this week and talking with other doctors and reviewing literature.
So if you read this, say a prayer for her. Say a prayer for us. Let her heart be repaired. Let it not impact negatively her spine. Let it allow her to grow and thrive. And let things start looking up.