Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Sunday, December 30, 2012

Antibiotic Round #6

Callie saw her allergist on Thursday and after a lot of discussion of what she has been going through. He decided to change her antibiotic, this is the 6th round of antibiotic! I am happy to report that after only 24hrs. on this antibiotic her cough was totally GONE:) Praise the Lord! So, the talk was if this does work then we might need to look into putting her on antibioitc prophylactically. In other words, she would get a small dose of antibiotic daily to prevent her from getting these recurring sinus infections. There is also blood work pending that will take about another week to come back, we don't really expect much but the docs wanted this done, to ensure we are covering everything. We are so happy to have all the coughing gone and her appetite is picking back up :)

                                                        Callie riding on Christmas Day!

Wednesday, December 26, 2012

Follow up ENT appointment

Callie had her follow up ENT appointment bright and early this morning! BLAH! I hate getting up early. The doc went over her CT results and said her CT did not show anything abnormal and her adenoids were a little enlarged but not by much, he thinks they are a little large just as a result of her having infection for so long up in her sinuses because a few weeks ago they were not enlarged. So, at this point he DOES NOT recommend her having  adenoids out or the sinus surgery, her said all that would be elective surgery that from all the tests the problem does not have anything to do with her sinuses. He also said, that the cough she has does not match the normal so called dry cough you get with a sinus infection. Callie's cough is very wet:/ So, he believes there is something else contributing to all this. But what?? We are not sure yet. They are keeping her on antibiotic permanently till they get to the root of the problem. I am not happy about her staying on antibiotic, it makes me so mad.

With all that, she had allergy testing today. Which will take weeks to get back and tomorrow she has appointment with the Allergy doctor to see if he can offer up any advice on this matter. This is very frustrating and we are so tired of hearing her cough. Please pray for light to be shed on this matter and that we can get her better once and for all. As I said before, this might extend our stay in CA. We still have bracelets for sale to help with all the expenses of the upcoming trip or you can just donate. Every little bit is very helpful and very much appreciated.

Tuesday, December 25, 2012

Happy Birthday, Jesus!

Merry Christmas, Everyone! Callie has had an awesome Christmas and we all have been blessed beyond measure.
Callie is still struggling to get rid of her cough. They can't seem to clear up her sinus infection, she is on her 5th round of antibiotics in just over a month. We have appointment tomorrow with ENT to discuss her issues more. As of right now, the plan is for her to have sinus surgery in CA and also have her adenoids removed. But, we will know more tomorrow. So, please pray that we can clear this cough up, otherwise we might have to delay her cath which would put us in CA longer and she would have her sinus surgery 1st and then a week later or so have her heart cath.

Friday, December 14, 2012

Little update:)

My sweet girl had her Christmas pageant at school today. It was a precious sight to see:) Callie is so exicited about the fact that Jesus' Birthday is Christmas day! She talks about that more than presents. I am so thankful to be able to send Callie to a place that does such a wonderful job of teaching her the love our Savior has for us.

In exactly 1 month from today, Callie will be in the hospital for her 13th heart cath!!The 13th time is just as hard as the 1st, it never gets easier. Please just keep her in prayer over this next month and that come January all will go well.

"Glory to God in the highest, and on earth peace, good will toward men." Luke 2:14

Thursday, December 6, 2012

We have been getting ready for Christmas around here! Callie is so exicited for Christmas, although she is still terrified of Santa!! LOL Callie has been battling her cough again for over 3 weeks now which is a result of another sinus infection. She is on her 3rd week of antibiotic and will remain on them till the 21st. YUCK! I hate her being on so much antibiotic. Monday she will see an ENT to see if we can figure out why she has so many sinus infections and if there is anything we can do to help the problem. As most know, we leave next month for California. Callie will forsure have a heart cath and is schedule for open-heart surgery but there is always a chance it will canceled if things aren't how they want them in order for her to have her next surgery, the bi-directional glenn. I really hope that she won't have a surgery in January, she went through so much back in August 2011 with her 3 open-heart surgeries with in just days of each other that was enough to last all of us FOREVER! But, I try to remember God's timing is perfect. It can be hard at times to keep that in the front of my mind. But, for now, we just continue to be thankful for how awesome she is doing and just take day by day. We have bracelets for sale if you would like to support Callie on her coming trip(see on right side of blog) or you can just donate; every little bit helps no matter the amount. Proceeds will help with things such as traveling expenses, housing, rental car, medications, etc. Please continue to lift Callie up in prayer as her next trip inches closer and closer. I will update again next week and share about Callie's ENT appointment. Pray for answers and solutions. Thank you to everyone who continues to support my sweet girl and our family, each and every one of you have made the past 5 years a little easier for our family and we are so grateful.