James is now coming with me to Portland for Levi's scan!!! Our dear neighbor offered to stay with the boys overnight so James could come too!
Friday, 12:45 pm
It's amazing how much things can change with one little phone call.
I had gone to a kindergarten informational meeting last night. As I was leaving at about 7:30 pm, I realized my cell phone was buzzing and just missed the call. I listened to the message in the car and it was Levi's cardiologist. She said she had heard back from Boston and would try our home phone.
So I raced home and when I walked in James was still on the phone with her. When he was finished, he handed the phone over to me and Dr. Tajchman filled me in.
Boston had called with both good and bad news. The good news is that they think they can repair Levi's aortic valve (repair doesn't mean fix in this case, but it could buy him a few more years before a valve replacement is needed).
The bad news is that after reviewing all of Levi's echos and the one CT scan done his first week of life, they think that Levi might have a chronic aortic dissection. Aortic dissection is a condition in which there is bleeding into and along the wall of the aorta (the major artery from the heart). This most often occurs because of a tear or damage to the inner wall of the artery. This is very dangerous and can lead to a rupture and death. You may remember that this was mentioned back in the very beginning, when Levi was a few days old and in the NICU at OHSU in Portland. It's believed that the wire used during the balloon dilation when he was first born may have caused an injury in his ascending aorta. At that time Levi had a CT angiogram done to see if the wavy flap seen on the echos was a dissection or not. The results came back that it wasn't a dissection (great news at the time), but that instead it may be an intimal tear that could eventually heal itself or a thrombus. Still not good, but better than a dissection. Since so much time has passed there has been less concern about this, until now.
After reviewing everything, Boston has reason to believe that it may indeed be an aortic dissection. Levi's records were reviewed by a team of doctors in Boston, including highly regarded surgeons, Dr. Pedro del Nido and Dr. Christopher Baird. Dr. del Nido is "the" man over there and one of the best in the world. They want Levi to have another CT done soon to hopefully give a more definitive diagnosis. If it's a dissection, that may mean he needs to have surgery to repair that as well as his valve sooner rather than later. We are really, really hoping this is not a dissection!
So the next step is the CT. Unfortunately, we need to drive to OHSU in Portland for this, as his cardiologist thinks this is the best facility for this test.
I just received final confirmation that he is scheduled for check-in at 7:00 am on Wednesday, March 9, with sedation at 8:00 am and the scan at 8:30 am. Food and milk restrictions ahead of time, which is never fun. At this point the plan is for Levi and me to drive over on Tuesday afternoon, hopefully stay at the Ronald McDonald House next to the hospital, and then have the CT done first thing the next morning and drive home that afternoon.
Once the results are in, we'll know much more and our cardiologist will forward the images to Boston, Stanford, and LA. Then we'll see what comes next. I'll update the blog as we learn more.
We're just so sad that our sweet little guy has to go through all of this. Thinking about open heart surgery scares us. We've known that it would come to this, but the reality of it is hitting much harder right now. My whole body aches for Levi. I didn't sleep much last night. We also still need to tell the other boys. They don't know about Levi's condition. Because of their young ages, we've decided to tell them once things start moving in the direction of an intervention being needed. I guess that might be soon.
Thank you for all of your prayers and offers of support and help. That means so much to us. We pray God will protect and heal our little Levi. We thank Him for His faithfulness and pray for His perfect will to be done, whatever it may be. Levi's life has a purpose and a bigger plan than we know. We are learning to take each day as it comes and know we are not walking this alone. Please pray for peace and wisdom as we continue to navigate through all the unknowns.
Now I'm off to a kindergarten school tour. It's weird to still have the normal day to day things happening when so much more is on my mind.
I'll keep you posted.
Love,
Erika
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