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, September 25, 2011

Thought I would do a follow up from my last post, so everyone could be brought up to speed with what is the latest with Miss Callie.

All of Callie's GI test were normal, she saw the GI doctor a week ago and at that appointment that diagnosed Callie with Cyclic Vomiting Syndrome. If you don't know what this syndrome is, take a minute and look it up. Let me just say, it is HORRIBLE. Basically, it comes in cycles and you have know idea how long a cycle will last. Her last cycle was 10days, 10days of nausea, vomiting and feeling horrinle 24/7, it is miserable to see your child like this and your helpless. It puts your life on hold because doing anything is impossible. Callie gets Ativan as needed to help and they started her on Cyproheptadine to hopefully give her longer breaks in between her cycles. As of right now, she has only had a total of about 8days this month where she hasn't been sick=( This vomitng syndrome has triggers, such as stress, excitement and whatever else. Obviously, Callie's is stress! Everyone's thinking is all the physical stress her body encountered this last hospilization brought this out in her. Thursday Callie has an appointment with Neurology, I am hopeful they will be able to start her on an additional medication to help with this cycles.

We attended the Heart Walk on Saturday for the first time since Callie was born. Every year we have been in California, so this year I was very happy we were home for it =)

Thanks for checking in!

Will update after her appointment on Thursday.

Wednesday, September 14, 2011

We are home. Been home for 2wks now tomorrow.....My little girl turned the big 4 on the 4th:) I can't believe how fast time has gone by, I still cannot believe she really is 4.

The picture to the right was taken this past Saturday when we celebrated Callie's birthday with family. She is holding her "Beads of Courage" that was started this last hospilization. Each bead represents a procedure she has had done. Although, we did not include every bead for every procedure we including the major ones and will continue to do so. I think it is nice for the kids to have as they get older, it defiently tells a story:)

Callie has been struggling with vomiting since before we left CA. So far, it comes in cycles. She will be sick for 4 days and then better for 5 days and the cycle so far has continued to repeat itself. Not exactly sure what is wrong. Callie has been seeing her cardiologist weekly since returning home ( a HUGE thank you to Dr. Lacey for being so caring and doing all that you do for Miss Callie, we love you) and there are no obvious answers for her vomiting. So, today we went for a stomach xray, tomorrow she will have a stomach ultrasound and a barium swallow to look at her stomach and intestines. Please pray for some answers and that this will all stop! It has been 100% miserable for her and her voice is completely GONE due to vomiting so much.

We are thankful to be home and are looking forward to Callie feeling better so she can get back to her normal routine of things.

Callie will return to CA in January she is currently schedule for a cath and surgery. Her surgery would be to repair her narrowing (that is causing her high bp) and then her Glenn. I will breath a huge sigh of relief when she gets that Glenn!

This last trip was extremely terrifying and I never want to see my child go through any of that every again. Thank you to the CVICU and Dr. Hanley for being so awesome and saving my daughter's life!

Lord, you have been by Callie's side every second, through every surgery and every blood draw. Your plans for her must be out of this world because you have created one strong little girl, that I admire and love with every ounce of my being. Thank you for blessing us with one beautiful, amazing 4 year old!

Will update soon with Callie's continued progress.