After talking with Holden's specialists today, it seems that Reece and I did not fully understand or were initially told incorrectly about the possibility of living with only 3 pulmonary veins. Although only time will tell if this will work for Holden's body, the good news is that IT CAN!! Thank you, God!What a roller coaster ride!
The Little Monkey has been doing well with his recovery. We have been able to wean him down on his oxygen to 1/2 liter. And although his energy level is not quite back to where it was, he manages to play in between his cat naps.
I reached out to the doctors at Children's Hospital of Boston, who have both a pulmonary vein stenosis and pulmonary hypertension program and have asked that they provide us with a second opinion on Holden's condition. They contacted us within 2 hours of receiving my email and hope to have their evaluation back to us within a week (once they receive a copy of Holden's files). And while Reece and I have the utmost confidence in Holden's Atlanta doctors, I could not sleep at night if I did not try to explore all of our options. And since Boston is the leader in these areas, we'd be crazy not to at least see what they have to say. (We asked for this 6 months ago, but the initial doctor in Boston had not replied.) These diseases/conditions are so new and so rare that there are not a lot of cases to refer to. And so much of what the doctors recommend is speculation and trial and error.
So while we still have a long road ahead of us, I am breathing a little easier tonight. Thank you to all of you who reminded me not to give up hope!!
