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.

Wednesday, January 27, 2010

Quick Update

Callie did well with her cath yesterday, it was a very long cath procedure. We handed her off at 1215pm and didn't see her again till 7pm. She stayed intubated all night, due to the bleeding she had in the cath lab. Also, her lungs needed some time to rest. They were able to finish what needed to be ballooned and her pressures look much better now. These results from the cath seem to be more promising for the future, than the last cath. Callie was extubated today around 3pm and is doing well on oxygen. Mainly just sleeping because she was on some pretty heavy sedation when she was intubated. Praying for an easy, smooth night!!!! Will left today around 10am to head back for Jacksonville:( I meet with Callie's heart surgeon, Dr. Hanley, tomorrow at 930. Just to try and get some answers on certain issues that are going on with Callie. Will update more on that later. Hoping to get her out of the hospital tomorrow afternoon, if all goes well:) Will update soon, off to sit with Miss Callie:)

Monday, January 25, 2010

Cath #8

Callie's cath is scheduled for tomorrow, Tuesday the 26th at 130pm. Please keep her in your thoughts and prayers. A big update will follow in the next day or so, to explain all what is going on with Callie.

Friday, January 22, 2010

Cancelled once again.....

Callie's cath was cancelled once again, now scheduled for Tuesday. We will confirm that day on Monday. It was cancelled due to Callie spiking a very tiny fever, barely a fever. They had her come in to have blood work and chest x-ray done to be sure nothing was trying to brew. Everything came back good. In fact, her chest x-ray looked better yesterday then it did we she was discharged after her last cath. But, we rather be safe than sorry. So, it was decided to put the cath off until next week. Will was able to fly out here, to spend some time with us:) He will be flying back probably around Tuesday. Thank you for everyone for all the prayers and I will continue to update on any news.



Tuesday, January 19, 2010

Cath CANCELLED

Callie's cath was cancelled today. She is now on the schedule for Friday. Today was a very stressful and frustrating day! Tomorrow we are supposed to find out if she will be having a heart surgery. So, at least we will be getting some questions answered tomorrow. Callie hasn't been sleeping the best, she wakes up in the middle of the night very frantic and it takes a while for her to get back to sleep. Also, her eating has declined a little, thinking it's the stress of being away from home and her Daddy. Wish Will could be here with us, it would help to relieve some of the stress! Please continue to keep Callie in your prayers and for good news tomorrow. I could use some uplifting news right about now.

Friday, January 15, 2010

Callie's Cath

Where do I beginning!?! Needless to say, Thursday was a very long, stressful day. Callie went in about 930am and finished around 3pm. This cath was to look at the pulmonary viens on her left side and collaterals, etc. Callie's right side looks great, getting great blood flow to that right lung. I wish the same could be said for the left side. Her left side has many narrowings everywhere. Her upper pulmonary vien was narrowed again, like always, they balloned that back open along with some collaterals. They were only able to balloon half of what needed to be ballooned because they didn't want to do it all and put her lung through extra stress.For some reason it has went from only a few narrowings back in September now to LOTS of narrowings throughout that left side. Her pressures were also very high on the left side, due to all the narrowings. Her pressures were in the 40's, which for those of you who don't know it should be more like 20!! So, Callie spent the night in ICU as an extra precaution due to some bleeding she had in the cath lab and fluid build up on the left lung. She was discharged today around 1230 and is doing well. They want to bring Callie back on Tuesday to have another cath. Callie will have her cath around noon on Tuesday to finish opening up the rest of the areas that are narrowed. Then on Wednesday the are supposed to have a meeting about her with her surgeon to decide the next step. To decide if it's best to send her home or to do another heart surgery. It's discouraging to get this type of news but trying to be strong and positive that this to Callie will overcome and the Lord can bring her past this. My Mom leaves in the morning, so it will just be Callie and I. Sorry, for not updating sooner but things have just been so hectic and stressful. Didn't even get to talk to GI but right now that is the least of my worries. Please keep Callie in your prayers and for my strength to just "DEAL" with everything. I won't deny it's hard but holding on to the Lord is in control and he will see us through this like he always does:) Of course, Miss Callie is a trooper and is so brave! But, I wish I could be the one going through this and not her. She shouldn't have to endure all this, but I know the Lord has great things in store for her. That's the only way I can look at it. Just so everyone knows, I didn't bring my laptop so that's why I haven't been doing a lot of updating. I haveto use the computers at the house and it's hard to get there and sit down and type with Miss High Maintenance. But, I will do my best so bare with me:) Hope everyone is having a great new year.

Tuesday, January 12, 2010

We Are Here......

We arrived safe and sound. Had pre-op done and heart cath will be on Thursday. They had to move her from Wednesday to Thursday because Callie's caths take so long sometimes. GI is also going to see her for her throwing up, so maybe we can get some answers out of them. That's all for now, Callie is cranky and ready for bed. Will update soon. Thanks for all the prayers and support:)

Saturday, January 9, 2010

#6 Trip to California.....

Hi Everyone,

Just wanted to update before I got to busy, before we leave for California. We are flying out Tuesday morning, bright and early at 530am. I hate getting up early!!!!!! Callie has pre-op the same day at 2pm. Then, her heart cath is schedule for 830am on Wednesday morning. If all goes well, we plan on flying home on Saturday. Fingers crossed!!! Will cannot go on this trip, so my Mom is coming with me to help out. Which I am so grateful for because Callie can be a handful at times when she is at the hospital! Please pray for a safe trip and our plane gets there on time especailly since we have pre-op the same day. Please pray for Miss Callie and for the Lord to be watching over her, for good news and for no surgery at this time. Also, pray for the Nurses that Callie doesn't knock them out! LOL She has some what of a temper:)