I've been having funny feelings about Grace lately- call me crazy, but we've gone too long without major cardiac concern. I've spoken about these concerns with family, friends, other heart parents, our cardiologist, cardiac nursing friends, etc. I was starting to feel less concerned, but there was something that just didn't sit right.
I'm glad I followed my gut. I decided to seek a 2nd cardiology appointment with another practice. I adore our current cardiologist- he's youthful, optimistic, upbeat, kind, great with words... this was not personal in any way. When it comes to my kids, I just want to be sure I'm doing my best to get them what they need, so off I went.
Grace's most recent ECHO showed that the right side of her heart continued to be enlarged- working harder to compensate for issues. On a scale, she was a 120, with 150 beginning the point of no return (CT surgery imminent). This number doesn't typically change quickly, but it shows that her heart function isn't perfect, and will require intervention in the near future (1-2 years). We knew this, we are okay with this. Grace also has a 12mm conduit (homograft)- this is one of the SMALLEST conduits made. She's had this in place since July 2009.... there are kids that are smaller than her with larger conduits, and they're looking at replacement in the next 2 years. Again, we knew this, we're okay with this, but we don't want to wait until "too late".
We decided months ago that we would be going out of state for Grace's next heart surgery- and Stanford seemed like the best fit. I had been in contact with their surgeon, and we were waiting until Grace was deemed "ready" to be presented (post-cath or MRI here in Phoenix).
Today was our 2nd opinion- a 4 hour appointment! Grace was a champ. We left with MUCH information... where to begin?!
Apparently, we are all born with outlying pulmonary arteries that continue to grow for the first 6 years of our lives. If we reach the 6th year point, essentially we deal with what we have. We can balloon or stent, but no more true "growth". In Grace's case, she has SUPER tiny outlying PA's. September of 2010, Grace had her right side ballooned, and left side stented, because her heart pressures were approaching a bad range- as her heart was pumping against a "traffic jam", per se. The procedure helped. Today, we were told we need to be pro-active and take advantage of the next 3 years in growing larger and more PA's, to continue reducing the overworking of the heart, keeping us in a safer zone, and giving her a better long-term prognosis. Makes sense, right? A cath procedure- minimally invasive with potential long-term benefits? Yes, please.
In Grace's last OHS, the surgeon discovered multiple collateral arteries, or MAPCAS. Because none of them were of substantial size, they were coiled and killed off, instead of harnessing them for greater good in a unifocalization procedure. I was concerned that Grace's body was generating more collateral arteries, and that if we didn't see someone (surgeon) with MAPCAS experience, we were doing a disservice. Fortunately, (GOOD NEWS!) MAPCAS are not a concern at this time-there are no notable collateral arteries. Yippee!
Lastly, and here is where it get's confusing.... we have and have had, a valve issue. Grace's homograft (the 12mm one) is essentially a synthetic pulmonary artery, as she was born without one. The conduit looks decent- minimal narrowing. It could probably go another year or two. Unfortunately, the valve within the PA (typical of TOF kiddos) will begin to leak, wear out and need to be replaced. When TOF kids are born with their PA intact, this can potentially be replaced (after the 1st initial placement done OH) in a cath procedure, using a melody valve.
What does this all mean? Essentially a cath in the next 90 days @ Stanford. The cath will determine what outlying PA's can be ballooned, stented, grown, etc.; and if her conduit is big enough to accept a melody valve. Stanford needs to decide whether they'll: 1. do nothing; 2. stent/balloon/grow; 3. place a melody valve & determine replacement date of conduit; 4. do replacement of valve & conduit, or set a later date to do so.
Basically, we're going to Stanford blind. We could end up being there for a minor cath, or her complete repair (2nd). In a way, this is good for me. I don't have the time to panic about the what-if's.
Faxes have been sent. 16 DVD's are being fed-exed. Stay tuned....
PS- Grace's 1st Make-a-Wish visit is coming! Day after her 3rd birthday!!!
Oh yes, and to cap my great day off? My hubby ran a red light tonight and T-boned someone, totaling his company car. Awesome...