Merry Christmas to all! and a very special Christmas wish to all the children celebrating Christmas in the hospital this year. Santa Claus was very very thoughtful this year and left a plane ticket to Boston in my stocking! He was thinking it would be nice for me to make a trip up there to meet Jessamyn and Baby Pierce! I am leaving tomorrow morning bright and early. I am looking forward to meeting them and other Heterotaxy families at CHB.
We had a wonderful Christmas at home. Logie was a little overwhelmed on Christmas Eve, and super tired all day on Christmas. Logie’s favorite present was 2 brand new wubanubs (so easy to please!)
I will post pictures when I get back from Boston.
I hope that everyone had a peaceful Christmas and will soon have a joyful New Year!
Just got off the phone with Jessamyn and Pierce is doing astoundingly well. For a family that was told surgery would most likely be a death sentence things have really turned around since Pierce was in Boston. Pierce had surgery on Monday afternoon, went in around 1pm and came out around 8pm and has since, he had a TAPVR repair, AV canal repair, and other repairs with no name because Pierce is so complex that there are no standard repairs.
Critical 48 hours after open heart surgery have been completely uneventful with no codes or desats. He is following his post op recovery to a T.
I have to say this…Children’s Hospital of Boston never gives up on kids. They bring hope to kids that others have given up on. Not just in Pierce’s case but I personally know of 5 other families in the last 6 months whose children were sent home to die by another hospital only to be giving the tremendous gift of life by the Cardiac team at Boston. CHB is in a league all its own. Thank you, thank you, thank you, CHB for never giving up…as a Mom with a child who carries an 80% mortality rate you have brought me nothing but hope, and you are doing that every single day for so many families. Not only do they have the best outcomes but their outcomes are on the absolute sickest children in the world.
As Pierce recovers beautifully from his extremely complex surgery another little boy named William is set to go to step-down at CHB. William was another Heterotaxy boy who was sent home to die by another hospital. Just 2 short months at CHB William is thriving for the first time in his life! For the first time in his life he is all smiles and off a ventilator. Children’s Hospital of Boston has given these two Heterotaxy families Christmas Miracles! And from the very very very bottom of my heart and the Heterotaxy Community THANK YOU BOSTON!
Meet Baby Pierce. He has a very similar type of Heterotaxy that Logan has. Jessamyn (Pierce’s Mother), myself, and many others fought like mad to get him transferred to a heart center that has more experience with these types of children. That was going to be his only shot at living. Pierce is so sick that even in the best hands his recovery is going to be very hard.
For a Preview of the CNN piece please veiw the short promo piece on the below link (takes a little time to load…)
Finally, after the fight of our lives, Pierce arrived safely in Boston last Fri. night. He is going into surgery today. Today is the day that Pierce’s heart will get fixed. Please keep this family in your hearts today as Pierce under goes a long long long surgery.
For the full story on Pierce please tune in to Anderson Cooper 360 on CNN tonight. This is a very important story. This is a story not only about just Pierce but a story about how difficult our current medical system makes it to get our children the best care we can. This is a story that affects us all.
And please remember to check out The Heterotaxy Network on FB we have a small but mighty group of heterotaxy families. I can guarantee you that there is no group on the planet more knowledgable about heterotaxy than our humble group of families.