broken heartsville:
I can't remember if I had mentioned before here that Keagan, as a side note, was diagnosed with a heart murmur. In the chaos of diagnosis, that was such a non-issue that frankly I forgot about it for a while. When we got to Bragg, I mentioned it to his pediatrician and she re-issued our referral for cardiology. We went in last month, and were told that he did have a heart murmur, but it was probably nothing. They sent us to Duke Cardiology for one more test, because the machine they had at Womack wasn't designed for pediatrics and couldn't give a clear enough picture-- they weren't able to clearly see one of his aortic valves (but again I was anything but worried, because they told me when I was pregnant that he might be missing a kidney-- he's not, the Army just needs better equipment) and wanted to just be sure.
When we went in last week, we saw the same cardiologist (to anyone out here who needs a pediatric cardiologist, Dr. Miller is absolutely wonderful) as before. He remembered us, and off we went to have an electrocardiograph done on Keagan's heart. As the stenographer began the test, she suddenly got up and left. When Dr. Miller came back, they exchanged a few words and he turned to me and said, "I'm so glad you're here." Uh... alright? Cue a little knot of worry in my stomach.
After the test was completed, we went into Dr. Miller's office and he began to draw me some pictures. What he told me was that while he is actually missing a valve in his aorta (the condition is called a bicuspid valve), that was the least of our concerns. He has a narrowing in the main part of his aorta, called an aortic coarctation, that was fairly severe and would require surgery. As a by-product of the coarctation, he had some hypertrophy in his left ventricle (hardening of the heart tissue that can cause heart failure if left unchecked). He told me that his heart was working entirely too hard to pump his blood through the narrow portion of his aorta, and while it wouldn't become an emergency in the next 6 months, after that, there was no telling if he would experience some form or another of heart failure.
The plan currently is to have him go in for a cardiac MRI to get an even better picture of his heart and be able to form a 3-D picture/ surgical game plan for his 6-man pediatric surgery team. We will find out when his MRI is within a week or so, and then surgery should be scheduled a few weeks after that.
Chiari update:
I don't have much to update except that he seems to be showing signs of progression. He woke up almost 2 weeks ago with noticeably altered speech that has not yet improved all the way (or possibly at all, but I work extra hard to understand him, since few people can, so I'm used to his speech). The best explanation I can give is that before this, he could clearly say "fish," and now he says "fffffffffff."
We got hooked up with the Early Intervention specialists, who will be providing us with speech and physical therapy to help him learn to overcome his disadvantages due to his progression (they'll be working with him on his speech and balance better than I can on my own). They are going to start working with him Thursday morning, so we'll know how major his delays actually are by then.
His spine issue is just due to my increasing knowledge of his CM issues. There is a risk, with a CM, of cerebrospinal fluid building up in pockets in his spine, called syrinxes (I think?). From my understanding, it can cause nerve damage and extreme pain-- I don't think he has any, but what do I know? We are scheduling a follow up brain scan and spinal MRI this week as well.
Life is moving fast for us now, and I'm extremely emotional and overwhelmed, but I definitely feel we are in the right place for him to get the best treatment possible for his conditions, numerous as they may seem. I hope all of this will be a distant memory some day, and I'll be able to cheer my son on as he does whatever he chooses to do in life, with no consideration for the limitations imposed by his CM.
No comments:
Post a Comment