Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Monday, October 1, 2007

The port is out!

Madelyn had surgery today and had her port removed. There is really nothing to speak of about today. We were headed for home by 10:30 AM. We asked for, and received, the port for our keeping. Some would think it's odd, but it's a small symbol of what she has gone through this year. Dr. Adkins said he was going to cut off the flexible catheter part, but he left it on. The tip of this catheter was in the atrium of Madelyn's heart for 7 months. It's weird to think about.

The post-treatment echocardiogram was done last week to determine if there were any ill effects from the chemo on her heart. The preliminary results show nothing, but there is a point of concern. The initial echo we had on February showed that Madelyn has a PFO (patent foramen ovale). This is a hole in her heart between her right and left atrium. Most children have this, but the expectation was that it would close as she continued to develop. It appears that is not the case and she still has it. About 20% of the population walking around today has this and it is not in itself a major issue, but we are seeing a congenital cardiologist on Wednesday. We have now found out how serious this could have been with her having a catheter in her heart. The likelihood of having clots from the catheter tip are greatly increased over a normal person, and if a clot had formed and passed through this opening to her left atrium, the clot could have been forced out the her body, possibly her brain, which could have resulted in a stroke. If forced out of the right atrium, it could go to her lungs which would be a pleural embolism, which is life threatening as well. Without the catheter, her likelihood of having clots for in this space is more significant than a normal atrial wall. We're taking this seriously, but we're not going to stress until we see the cardiologist and hear what the have to say. There is a procedure that offers a repair through a catheter ( no open chest surgery) but she is not automatically a candidate nor is it something we just choose to do. Placing a catheter in her heart and having someone sew the hole shut opens the door for serious complications. I think the degree to which the blood flows between the chambers and the size of the opening will determine what course we take.

Madelyn came home and ignored doctors orders. She was very playful in the early afternoon, but she did get fussy later in the evening. This could be a direct result of not getting her normal bath time. She loves playing in the tub.

Please continue to pray for Madelyn and our family. It works. We know.


The Bell Family

PS - If you can, please visit some of our friends links on the right. There are families still in the thick of their fight. It doesn't matter that you don't know them or they don't know you. We appreciate all of your comments, but one of the truly amazing things about the comments here are the ones from those people we haven't met yet. We are all children of God and that's what binds us. We'll meet sometime, either here on Earth or later in Eternity. It makes sense to introduce yourself now. Thanks!


Michelle said...

Happy Birthday Maddy! I am so glad you got to have your port removed, I can't wait for Mackenzie's to be removed as well. I hope you had the best time enjoying everyone around you who loves you so very much on your birthday. I hope everything goes well with the results of your cardiogram, we will be praying for you. If you and mom are still coming to Albany, I can't wait to meet you.
Sheila send me an email if you are still coming to the area, my email address is mwestfall@uamail.albany.edu

Best wishes,

Anonymous said...

Hello Dear Bell Family, Greetings from Sunny South Africa. Im Megan and my nephew/Godson was diagnoised with stage 4s Neuroblastoma in May at age 8 months. He is currenly having his 9th round of Chemo and doing well - Praise the Lord! I have been reading your blogs daily for the past few months and following Maddys progress and I just wanted to email you to say that she is always in my prayers and thoughts and Im in awe of Gods great work! Im so happy that her port has been removed and she is considered NED!!! We continue to walk this journey with all the other children and to see all of these kids courage and bravery inspires me to be a better person and never take one day for granted! I will continue to follow Maddys progress and just know that she is one special lady! Sending big hugs, Megan du Plessis (Aunt to Deqlan Higgins) www.deqlanhiggins.blogspot.com - would love to stay in contact with you! God Bless

Anonymous said...

Hello Rick, Sheila, Madelyn and family:

Liz Ratschki here - family of Liz Neild. Writing to say I just got caught up here on the blog and it is thrilling and moving to hear the good news and see such a beautiful and happy child! Think of you all often and keep you in my thoughts and prayers. This little girl surely inspires me. It is humbling the way she has handled all of this, and I admire the love and respect you both have for her as well. Wishing you all well, Liz Ratschki