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, April 28, 2010

Change Of Plans


Callie was supposed to have another surgery this past Tuesday. But, surgery was cancelled. Dr. Hanley was under the impression he had only did an upper aortapexy in the past. So, Tuesday he was going to do a lower aortapexy. But, actually she has already had both upper and lower aortapexy. Futhermore, he is not so sure it is her aorta that is laying on her lower pulmonary vein after all. After looking over previous caths, they are starting to think it might actually be her spine pressing against her pulmonary vein!!!! That totally caught me off guard! Now the plan is to do a CT scan tomorrow morning to find out for sure before proceeding with anymore surgeries. She is supposed to go in at 10am, please pray everything goes smoothly and quick.

On a different note, Callie is now out of the ICU and moved to the 3rd floor today. If all goes as planned and no complications with the CT scan she will be discharged tomorrow afternoon/evening. She is doing AWESOME, thank you for all your prayers.

Dr. Hanley will look at her CT scan tomorrow and from there we will find out if Callie will have another surgery now or if he will wait before doing anything else. Will update as soon as I get any new information. New pics to follow in the next day or so:)

Monday, April 26, 2010

Prayer Request For Heart Friend


Please keep our heart friend, Reagan, in your prayers today. She will be having a heart cath to find out if she will need another open heart surgery. Please pray for everything to go smoothly and for positive news. Here is a link to her blog: http://reflectionsofreagan.blogspot.com/

Saturday, April 24, 2010

EXTUBATED:)


Callie had her breathing tube removed yesterday around 3pm:) Hooray:) She is doing very well on high flow oxygen and they have been weaning that down fairly fast. The hope is by tomorrow have her on regular oxygen! Her x-ray this morning was a little hazy compared to yesterday but overall not too bad. Callie is now off most of her drugs but is still very sleepy. Hopefully, she will wake up some today, to enjoy some Mickey Mouse Clubhouse! Callie's favorite show:)

Callie is schedule for surgery on Tuesday to have her aortapexy. Please continue to keep her in your prayers. Callie has been through soooooo much and I hate to put her through another surgery. It breaks my heart. There isn't anything harder in this world than having to watch your child hooked up to a million things and in pain. Please pray for the continued recovery of her lungs and little body, for the STRENGTH that she will need for this upcoming surgery and that the Lord will be with her every step of the way.

As always, we are so grateful for all the support.

Thursday, April 22, 2010

One day at a time....

Almost there!! Callie was going to be extubated this morning. But, she didn't tolerate the bare minimum settings on the vent this morning:( So, they are going to give her another day of rest and reevaluate in the morning. Her x-ray was basically on changed from yesterday morning to today. Please pray for total healing of Callie's lungs and we can get this yucky breathing tube out of her VERY soon!

We were able to speak with Dr. Hanley last night and he thinks Callie has done well enough, that she would do just fine having her next surgery. Which would be the left thoracotomy (that I spoke of in the last post) where he would remove the aorta off the lower pulmonary vein. My baby is such a tough cookie! It's so hard to have to watch her go through all this, but I know these surgeries are what she needs and that light at the end of the tunnel is getting closer and closer. We are so thankful to Dr. Hanley for all he has done for our little girl and continues to do. He is such a blessing to so many people:)

We ask for prayer for healing of Callie's lungs, this upcoming surgery, financially since Will continues to be out of work to be here to support his little girl and me. Just for overall strength for Callie, that she continues to pull through like a champ:)

Thank you to everyone for all the support.

Tuesday, April 20, 2010

Miss Priss Update

Callie is doing awesome:) Both her chest tubes have been removed and things are slowly dropping off!!! She is still on the ventilator just to give her some extra rest time but the plan is to extubate tomorrow:) YEA!!!! Not too much more to report, which is good.

On the other hand, we are waiting to speak with her surgeon, Dr. Hanley, tomorrow because he had told us after her surgery on Friday that if she recovered well that he could go ahead and do another surgery to remove her aorta off her lower pulmonary vein on the left side. That surgery would be a left thoracotomy which is through her back like her past surgeries. So, not sure what the decision will be on that but we will see what he has to say. The reason for going ahead in doing this surgery is so she doesn't have to in 6mths.

So, if 6mths from now what he did with the upper pulmonary vein and then possibly this surgery with the lower vein worked then she would be a candidate for her Bi-Directional Glenn:) Which would be so AWESOME!!!!!

Will update tomorrow with a follow up post of what's going on.

Saturday, April 17, 2010

Doing Good:)

Callie is doing very well. No major changes today, just letting her rest. Her x-ray this morning showed her left lung was a little hazy but nothing much, yet. We are waiting to see if her lungs suffer from reperfusion, it usually happens when you increase the amount of blood flow to the lungs.(like Callie has had done) It takes about a good 48hrs. to show up. So, so far so good. But, I won't be satisfied until Monday's x-ray then I will safely say, No reperfusion injury. If it does end up showing up, it just means a little more time on the ventilator. One day at a time:) Overall, everything is going GREAT! We are so thankful for how awesome our lil trooper is doing. She is such a tough cookie:) Will update again on Monday, hope everyone has a great weekend. Here are some pics.


Friday, April 16, 2010

ALL DONE:)

Callie is all done, just waiting to see her! She did very well. Thank you for all the prayers. Will update later.

Surgery Started

Callie was taken back around 730am for her 5th heart surgery. Please keep her in your prayers that the Lord will be with her and work through Dr. Hanley's hands. I will update as soon as we here anything, but we usually do not get updates. So, the next post will probably be saying, she is all done. Fingers crossed, that this surgery isn't as long as her previous surgeries! Will update soon.

Thursday, April 15, 2010

On The Right Track......

Callie is doing much better:) Her lung is finally recuperating from the trauma of the heart cath on Monday. Today's goal is just to keep her comfortable and sedated. Hopefully, everything will continue on this track and she will go into surgery tomorrow morning as planned.

We were able to talk to Dr. Hanley yesterday morning and the plan is to replace her shunt with a bigger shunt and he also wants to patch her upper pulomary vein to prevent it from narrowing all the time. He is pretty positive that this will work for her and stop that vein from narrowing every 2 seconds. Dr. Hanley still has hope (even more hope now than ever before) that Callie will make it to her Bi-Directional Glenn, as most of you know, that is the surgery Callie needs to get. But, has had some bumps in the road that has prevented her from getting that surgery. The long term goal is too bring her back in 6mths-a year depending on her progress and do another surgery to remove the aorta of that lower pulmonary vein. And at that point and time, she would possibly be able to have her Glenn somewhere down the road. Which makes us all very HAPPY:) We have full confidence in Dr. Hanley and are so thankful for all he has done for Callie because without him our daughter might not be here today. He is an amazing man and I LOVE HIM:)

Please continue to pray for a quiet day and that things continue in an upward trend and Callie will be good for surgery in the AM. I feel very confident that the Lord has been preparing me for this over the past few days and this is what Callie needs. I know the Lord will see her through this and be with her every step of the way. Will update again in the morning.

Tuesday, April 13, 2010

Heading Into 5th Heart Surgery..........

Callie is doing well, her cath was about 2hrs this time. She was finished about 745pm and she has been resting in the ICU since. The results of the cath showed that really nothing had changed since the last cath in January. Her right shunt is smaller and now TOO small for her and the right upper pulmonary vein was narrowed once again. But, everything else remained unchanged. So, they balloned open that vein again and that was about it. Callie is still resting on the ventilator, her left lung is suffering some. So, it needs a little time to heal. The left lung is her worse lung of the two, so when anything is done it hits it hard sometimes.

The game plan for Callie is to have her right shunt replaced with a bigger shunt. She is scheduled for Friday as of right now for surgery. It's always hard sending your child into a surgery but this upcoming one is weighing exceptionally hard on me. It's been a year and half since Callie's last surgery and it's been so nice. It's very hard to send her into another one but I know she needs this shunt replaced badly and replacing this shunt will hopefully get her breathing back comfortably. And all around in a better place. VERY HARD!!!!!

Right now, it's a little hard for me to sit down and gather my thoughts. So, please forgive me if there are things I haven't explained or are forgetting. Will is hoping to fly out on Thursday and will stay as long as he can. It's very hard on him to be away from Callie during times like these. It just very stressful in general to have your family split up in such an emotional time. I will update as things happen and if anything changes. I appreciate everyone and all the support and prayers everyone has sent our way. Please keep Callie in your prayers, for a successful, uneventful surgery and a speedy recovery.

Saturday, April 10, 2010

WE ARE HERE!!!

We made it to California and had pre-op yesterday. Everything went well. Callie is scheduled for 11am on Monday. Praying everything goes fast and smoothly!!!!! Will post more on Monday. Please keep Callie in your prayers and that we are home very soon with GOOD NEWS!!

Thursday, April 8, 2010

Bye, Bye Florida...Hello California:(

Just wanted to let everyone know, that we leave early in the morning tomorrow. Callie has pre-op at 2pm and then we have the weekend to rest up for her heart cath on Monday. I believe her cath is scheduled for 8am. Please keep us in your prayers that we have a safe trip and that good news is in store for our little girl.

Sunday, April 4, 2010

Easter 2010

We had a wonderful Easter. Callie had a blast hunting for eggs, I think she would have did it all day:) Enjoy the pics.