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.

Monday, May 31, 2010

Summer Time


Our family has been enjoying the HOT weather this summer, whether its at the beach, out in the yard, where ever it may be, just time together:)


Hope everyone enjoys their summer with family and friends! Stop a minute, to take in what's before you and be thankful. Sometimes it's easy to take for granted the everyday little things because time just keeps on rolling.

By the way, Callie is doing AWESOME:) Words cannot express what a GREAT feeling it is to be able to say that!!!!!!!!!!!

Friday, May 21, 2010

ALL BETTER:)

Callie woke up this morning and was just quiet. But, within about an hour back to being Callie:) Hasn't vomited at all today! Praise the Lord!!!! Praying whatever it was will stay gone. Looking forward to a day at the beach with Miss Priss:) Hope everyone has an AWESOME weekend.

Thursday, May 20, 2010

Can We Get A BREAK?????

Callie finally returned to her normal self, built her strength up and was eating GREAT:) Until, last Friday night.....she started vomiting. Each hour it seemed to get worse and worse. We just thought it was a stomach bug and it needed to run it's course. But, by Tuesday she wasn't really any better, still vomiting just not as bad and still very NAUSEOUS. I able to keep her hydrated because of her g-tube, otherwise she would be in the hospital. She has had NO fever or diarrhea along with this vomiting. Called the pediatrician yesterday to get her in to be looked at. So, today we went in at 9am, we were sent straight to Wolfson's for X-rays and blood work. She said, something is NOT right, you don't have a stomach bug for a week. She wanted us to got to the ER but I'm to familiar with the ER and I wasn't going to go sit for 6hours so my child could catch something else and then in the end for them to send me home with NO answers. Went to Wolfson's, had all the test ran and then back to the pediatrician where we sat for 2 1/2hrs waiting on results. Everything came back NORMAL!!! The next suspicion was a urinary tract infection, I guess sometimes, you can vomiting with those!?! Guess What???? NO UTI!!!!! In the end, we were sent home and to follow up in the morning to possibly have more testing, if she is not better. So far tonight she is the same:( As of tomorrrow it has been 1 week since this all started and we have no idea what is causing this vomiting. Praying it will STOP just as FAST as it CAME. Poor baby does NOT feel good at all, she just lays on the couch watching Mickey Mouse. Please pray for healing of her little body (and that nothing is seriously wrong), in time for the weekend and possibly a day at the beach. We have yet to got to the beach since we've been home:(

Wednesday, May 5, 2010

CT Scan, Discharge and Home

Callie had her CT Scan done last Thursday and the results were not surprising. In order to fix the issue she would have to be on bypass during surgery. So, we will return in October for Dr. Hanley to reevaluate the situation and go from there. This is an issue that has to be resolved in order for Callie to have her Glenn. But, we will take it one step at a time. We know Callie will get to her Glenn, one day:)

A few hours after her CT, Callie was discharged and on Saturday we flew home:) Callie was discharged with Methodone and Ativan, so for the first couple of days all she did was sleep. So, I cut her from every 6hours to every 12hours and what a difference. She is finally awake enough to get up and walk around:) The hospital was weaning her slowly due to her withdrawal issues but I think they had her a little too medicated!

Callie's color is sooo much better since her surgery almost 3 weeks ago. It's amazing!! She actually looks pink compared to the shade of blue she has been for so long. I can't wait till Callie gets her full repair, somewhere down the road! Her fingers and toes will be pink then:) In Addition, her breathing is no longer heavy and loud. That shunt definitely needed to be replaced!!!!! Now, we just haveto put some meat back on her bones:)

Can't wait to start going to the beach this summer with Miss Callie! She loves the sand:) We will enjoy our time at home over the next several months. Then, head out again in October for another heart cath. Thank you to everyone for all the support you gave us during this last trip to California. We are very thankful for everything and cannot say, thank you, enough.

Also, please keep 2 very special little girls in your prayers. Miss Reagan who went in for heart surgery this morning and is hopefully getting her full repair:) And baby Arden who is supposed to go in tomorrow for her heart surgery. Please pray that both of their surgeries are successfully and that there are no complications.