Hospital - Round 2

After a very beautiful Tuesday we enjoyed as a family of four at home (our first full day with no parents and no doctors since Miles was born), Wednesday was a horrific reversal. We came to Seattle Children’s yesterday for his short weekly heart check-up, and are still here as of this posting. The obstructing heart tumor has reduced in size, but is now replaced by the much bigger problem of an aortic valve that is suddenly leaking a great deal, and will need to be repaired or replaced via surgery. The working theory right now is that the tumor was ironically helping the function of the aortic valve, and now that the tumor has reduced in size, the dysfunction of the valve is suddenly apparent. But the doctors won’t know anything for sure until his surgery that is now scheduled for this afternoon. The most likely outcome is what is known as the Ross Procedure (look it up), and perhaps the best case scenario is that they are able to repair his aortic valve independently. He will be sedated for a few days afterward, and is then looking at 7-10 days or more in the hospital, not to mention likely follow-up heart surgeries as he grows into adulthood and other potential complications and/or surgeries on other organs related to his tuberous sclerosis diagnosis.

The miracle is that Miles has had the chance to grow a little these past three weeks, and has made it to this point without much medical intervention. In fact, he looks like a totally normal newborn on the outside, which we attribute to our friends and family keeping us in their thoughts, prayers, good vibes, etc. We are being well taken care of by very loving parents and fellow church members, but if you want to continue to help, all we can ask for is that you keep the prayers coming. When Jenny asked the head cardiac surgeon here what we should be doing to help Miles prepare for this daunting surgery, his immediate and emphatic response was to be positive. He said that in his experience, he can almost always tell going into the surgery how it will turn out based on the attitude of the patient, parents, family, and friends. Call it faith, placebo effect, or whatever, but he said that it makes a definite difference in the outcome. But we are also prepared for the worst.

True to his name, Miles is a soldier, and this soldier has a ton of fight left in him.