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Caring For Callie

$6,305raised of $10,000 goal
63%

Organizer: Supporters of Callie Beneficiary: Callie Carver

Callie is a 6 yr.old born with a rare congenital heart defect. Financial contributions are needed to help her family during her 9th heart surgery in California.

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Fundraiser Details

Callie was born September 2007 with an extremely rare, complex congenital heart defect. She has Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s & Hypoplastic Right Heart Syndrome. Up to this point she has had 8 heart surgeries,13 heart caths & over 30 blood transfusions. Callie and her family live in Florida and all of her surgeries are performed at Lucile Packard Children’s Hospital in California due to the severity of her heart condition.

In the past few weeks Callie's oxygen has dropped drastically and an echo revealed on Monday, Jan. 6 she is outgrowing her shunt she has which is her only source of blood flow to her lungs. California needs to see her ASAP and has her flying out to see them on Tuesday, Jan. 14 for a heart cath and her 9th heart surgery is on Wednesday, Jan. 22.  

Travel to California is a huge expense, on top of paying for lodging, transportation and meals. In these situations this family depends on the love and support of others around them. This trip is very unexpected and is happening very quickly for her family, please pray for Callie and this journey she is on.

You can read more about Callie's journey at www.caringforcallie.com

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Updates

Updates

01/27/2014
by Supporters of Callie

<img src="https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F3.bp.blogspot.com%2F-YrM0p46IyoE%2FUudDomNPxmI%2FAAAAAAAABAU%2FmztpgCgLyt4%2Fs1600%2F20140127_172359.jpg&amp;container=blogger&amp;gadget=a&amp;rewriteMime=image%2F*" alt="" width="180" height="320" border="0" data-orig-src="http://3.bp.blogspot.com/-YrM0p46IyoE/UudDomNPxmI/AAAAAAAABAU/mztpgCgLyt4/s1600/20140127_172359.jpg">

 

Callie moved from the CVICU to 3 West which is the step down unit. She had all her lines removed yesterday and not only has one IV for access in case we need it. She is back on all her oral home medications. Her blood pressure is still running a little high but seems to slowly be improving. Her chest tubes continue to drain which is the main thing keeping us in the hospital. You never can tell how long a chest tube might drain but we prayer not much longer. She is having some pain here and there but that is to be expected. 

 

 

 

<img src="https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-SP1uWkGqV8Y%2FUudDsRGp64I%2FAAAAAAAABAc%2FPiINqrPEQzs%2Fs1600%2F20140126_115736.jpg&amp;container=blogger&amp;gadget=a&amp;rewriteMime=image%2F*" alt="" width="180" height="320" border="0" data-orig-src="http://1.bp.blogspot.com/-SP1uWkGqV8Y/UudDsRGp64I/AAAAAAAABAc/PiINqrPEQzs/s1600/20140126_115736.jpg">

 

Here is Callie and 1 of her nurses from the CVICU, this was the 1st time Callie had been out of the bed since her surgery....they were showing off their tattoos. Callie has been giving them to all her nurses, including Mommy and Daddy! Today, we were able to get Callie to the playroom in the afternoon and evening so tonight she is pretty tired. Tomorrow we hope to get her over to the school in the hospital here just to keep her active and learning as much as she can ;-) 






01/25/2014
by Supporters of Callie

Think this picture says it all!
Callie is doing awesome to be just 3 days post op. The doctors are so pleased with her recovery especially since she got a late start off the ventilator compared to most glenn patients. She spent a whole extra day on the ventilator rather than getting off in a matter of hours like most patients. Callie's Glenn procedure was a very unique procedure it was not performed the conventional way and we are so thankful for surgeon who was able to successfully perform this surgery despite Callie's complex little heart. Dr. Hanley will never know how thankful we are for him and what a special place he holds in our hearts. 
Callie had some lines removed today and is back on all her medication from home, she has started back on her night feeds and she is only wearing oxygen here and there in hopes to help her heal faster. The oxygen isn't a requirement but the doctors believe that in glenn patients it help their recovery if they wear it as their healing. So, we try our best to keep it on her even though she hate it :-/ Callie still has her chest tubes and we are praying that they will stop draining so she can get those out ASAP. Her blood pressure is high right now so we are working to get that under control. So, the 2 main prayer requests are for her blood pressure issue to resolve and the chest tube drainage to dramatically slow down. At this point those are really the only things keeping her from being discharge.
I amazed when I look at her and just how resilient she is, the child seems to rock surgeries like a champ! She has more strength and determination than really anybody I know. I am thankful the Lord has allowed me to be a Mommy to such a special little girl. Again, thank you for the continued prayers, for all the financial contributions it has helped us out in ways that you can only imagine. 
Also, we finally got a room in the Ronald McDonald House as of yesterday. Praise the Lord! It feel like we would never get in...this is a huge blessing. 
I know I haven't been on top of my updates but I am trying. Callie has been very demanding this go around and she is wearing me out ;-) 





01/23/2014
by Supporters of Callie

Today was a pretty good day. She is still intubated, they want to give her more time to rest and all the work she had done to settled and make sure it is healing before they extubate. Basically, they are just being extra careful with her. Her lungs look good on x-ray, her blood gases are good. Her blood pressure has been a little crazy and it has been a balancing act all day! She was a little wild earlier today but they seem to have her sedation under better control this evening :-) 

 

Tomorrow morning sometime they will try and extubate her and please pray that all goes well and there is no complications. She is doing well for having had such a big surgery but she has watchful eyes on her due to her complexity and passed issues. 

 

Until tomorrow, I will leave with this pic....

 

<img src="https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F4.bp.blogspot.com%2F-_nuoAwX1--A%2FUuH4OOq7NkI%2FAAAAAAAAA_0%2FhqibN6973cI%2Fs1600%2F20140123_185038.jpg&amp;container=blogger&amp;gadget=a&amp;rewriteMime=image%2F*" alt="" width="320" height="180" border="0" data-orig-src="http://4.bp.blogspot.com/-_nuoAwX1--A/UuH4OOq7NkI/AAAAAAAAA_0/hqibN6973cI/s1600/20140123_185038.jpg">






01/22/2014
by Supporters of Callie

This was all of us this morning before she went back. Despite saying, she doesn't want to have her surgery or her favorite line, "Can't we do it next week?" She was happy and being such a brave girl.
They took her back around 830 CA time and they are still putting lines in etc. So it will probably be closer to 11am before they actually start and from there it will be 6-8 hours.
Praying for a smooth, successful surgery. My Mommy heart is scared but know she is in the best hands, please Lord, watch over my baby!





01/19/2014
by Supporters of Callie
Callie was discharged early yesterday morning from the CVICU. YAY!!! She was still vomiting some but not as near as bad, her cycle was starting to come to an end. She slept basically the rest of the day and by the evening starting to look much better.

We did have a room at the Ronald McDonald but it was in the Immune Wing of RMH and only for transplant, chemo patients and Callie cannot stay there. So back in a hotel we are and waiting for another room to become available :-/

Today we took Callie to Monterey Bay Aquarium, she loves it there and deserves it!!


It wore her out and by the time we got a late lunch, she was ready to crash, so we headed back to the Hotel. We cannot let her get run down or we risk her vomiting syndrome starting again! It is like walking on eggshells sometimes.


We are not talking about her surgery in front of her because we do not want her worrying or getting stressed out before Wednesday. She is schedule to go in around 7am CA time and we hope her to be done by 3pm if all goes well. Please continue to pray for her safety during this procedure and all goes well without any complications. While this is one of the simpler operations it can potentially be very risky for Callie because of her complex defect and it still worries me.

Thank you again for all the financial and spiritual support. We are so thankful for everyone who is praying for our sweet girl. Financially it is tough, especially with staying in a Hotel going on a week now(on top of our food, car, etc) and trying to keep up with bills at home. Sometimes we feel like we are drowning, so thank you so much for all your support we are forever grateful!

We are just going to enjoy the next couple of days relaxing and spending time as a family before surgery day!




01/17/2014
by Supporters of Callie

Sorry for taking so long to post, things have been very busy here and we have barely had to to sleep. I think the most we have slept at one time is 4hrs. As most of you know, Callie has been struggling with her Cyclic Vomiting due to the stress of having to come here and be in the hospital. It has been really bad and if any doctor, xray tech, echo tech, anybody other than the nurse walk in the room she will start vomiting. However, it is much better this morning and we are praying she won't really throw up anymore and she will get discharged today:-)

 

So as for the cath results, we were blown away with the amazing news we received. Callie was in the cath lab about 4hrs. give or take. She came doing very well! Her cath showed the her pressures are the BEST they have ever been, these are numbers they look at in order to do her Glenn. Her pulmonary vein that she has stenosis in was still open which almost a miracle. The shunt is starting to become to small very her and the blood flow she was getting before is not the same. The only issue was her aorta, as many of you remember Callie has 2 emergent open hearts after her main surgery in Aug 2011, well that was because her aorta ruptured so her aorta now has a narrowing it. So the narrowing had worsened since her last cath a year ago. So, they placed a stent and it should last a couple of years. Here is the news- Callie is getting her GLENN !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

We are beyond thrilled, its been a crazy and rough road but we are starting to see the light. Without Dr. Hanley none of this would have even been been possible, he has saved our daughter's life and we will never be able to say, thank you enough!!!!!!!!!!!!!! And it goes without saying, we serve a mighty God and at times we have questioned his plan for her but know is wisdom is greater than ours and have never given up on believing. Even in the midst of the roughest time, I still could feel sense of assurance from him that she will pull through. That is faith, you have to believe and trust without a doubt and lay it all at his feet. It is definitely a challenge because we as humans like to be in control ! LOL

 

Now that is good, here is thing we still have to think about. Callie is very complex so this surgery is riskier for her than most. Dr. Hanley will do it off bypass but there is a chance she would have to go on it during surgery if there were issues. Please pray this surgery will go perfectly and he can manage to keep her off of bypass. So surgery is for Wednesday and will be a 6-8 hour surgery.

 

Will and I are so grateful for the outpouring of support, the prayers are working in miraculous ways! 






01/13/2014
by Supporters of Callie
Please pray for Callie, she is already throwing up because of the stress from knowing she has to go to California. We are trying to raise enough so Daddy can take off work to help w/her in this difficult situation, as of right now he has to stay and work till the day before her surgery. It is very hard to travel with a little one throwing up the whole way. Please just pray for the Lord to calm her fears!


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