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!!
6 comments:
Keep on keeping the faith!! Holden is a fighter and our prayers help him fight. We've seen miracles in our family and believe in one for yours. Hug & kiss the little monkey for us.
Deborah & David
Christine -
This is such a great possibility - of course, we will keep praying, even harder, that Holden is one of the precious ones who can live with 3 veins. That thought has been in your head since your last posting, so obviously God has placed that on my heart to pray for already!
I look forward to the day when our little guys can play together and be buddies!
Love, Amelia
The power prayers! We are one step closer to our Little Monkey playdates! Holden is a fighter and so are you and Reece. We will keep up the prayers. Miracles are all around us. We love you.
Rita, Mike, Isabella and Evan
Precious Holden -continues to provide the rarest of insight into the healing power of love fueled by your example and the prayers of so many far and near. Thank you for keeping us informed and sharing with such loving and eloquent honesty and faith.
Love and blessings,
Bev and Walter
Yes...Holden's body can work with 3 pulmonary veins...it's doing it now! I continue to pray that God holds Holden in his big, powerful, gentle hands, and my prayers are with you and Reece too. There just is no other love like the love between a parent and child. But please...also take care of yourselves. Holden will be able to get more strength from you, if you are taking care of yourselves. I check here every day, and can't wait until the next 'Holden update'!
Love you all!
Cathy
Yaaaayyyy!!!! That is wonderful news. Stay positive,strong, and keep HOLDEN faith. I'm so glad you finally got in touch with the doctors in Boston. I'll keep praying they will also provide more good news. I love all of you so very much!!! Give little monkey a big kiss from Aunt Jo-Jo.
Post a Comment