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.

Friday, January 31, 2014

Happy to be Home


 
 
 
 
Haven't had much time to update, everything just seemed to happen in a blink of an eye this go around! Callie was discharged on Wednesday morning, exactly 1 week after her 9th heart surgery. So, we headed home early Thursday morning.
 
It seems like just yesterday we were flying out there and now we are already home. We are so thankful for her smooth and speedy recovery. Thank you to everyone who supported us and prayed for our little girl....she is such a miracle and we are blessed to be her Mom & Dad.
 
 

Tuesday, January 28, 2014

Busy Day


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.




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 ;-)


Sunday, January 26, 2014

Amazing


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 ;-) 

Friday, January 24, 2014

Holding Steady

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....



Thursday, January 23, 2014

Quiet Night

Callie did well with surgery, they did have to put her on bypass for 1 hr. due to calcification she had, it was so thick that Dr. Hanley actually had to get drills to drill through it. But, praise the Lord she tolerated bypass fine and had no issues coming off. Overall, her surgery was a success and once again we are so thankful such a talented surgeon!

Right now, they are just letting her rest....her lungs are a little irritated from such an intense surgery. The hope as of right now, is to get the breathing tube out early in the morning. With the Glenn they like to get them off the ventilator as soon as they can but in Callie's she is not typical and very complex so they have to tread lightly. Just to ensure her safety and a good recovery. 

I am praying for a quiet night and that her lungs make some good improvement over night so she is ready to get that breathing tube out in the morning :-)

Thank you for all your prayers, he is hearing them and we couldn't ask for anything better right now. Everything is heading in the right direction. We are going to try and get some rest tonight, well she is knocked so we can be prepared for her "wild" self when they extubate possibly in the morning.


Wednesday, January 22, 2014

Ready To Roll


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!

Sunday, January 19, 2014

Feeling Better

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!

Friday, January 17, 2014

Cath Results

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! 

Saturday, January 11, 2014

Overwhelmed & Confused

Due to Callie's echo this past Monday, that revealed her shunt no longer looks as open as it should be and providing sufficient blood flow to her lungs...California was called and the decision to have her out there ASAP was decided by her doctors there. We fly out Tuesday or Wednesday with her cath on Thursday, Jan. 16 and scheduled for surgery the following Wednesday.

I am confused at her situation because recently she has been very blue and oxygen in the 60s and now today she is back in the 70s. I just want to scream!!! She is still very blue and her appetite has went downhill in addition she gets tired very quickly. Even though she is schedule for surgery, there is always a chance she will not have surgery depending on what her heart cath shows....we just never really know. Which makes it that much worse. They are assuming at this point she has outgrown her shunt and they would proceed with her Bi-directional Glenn if this is the case. I am just very confused and worried at this point....I am not really sure what to think about what is going on with her. But, in order to get a better idea she needs to be seen in California.

We are thankful for the time at home and pray whatever will come about will be in God's timing and Callie will do wonderfully. Due to the way this trip came about, we have not had any time to plan for a fundraiser or anything like we usually do to help with the expenses of out trip. Every trip is very costly on top of maintaining our normal bills. The below website has been started to help offset the expenses we will encounter.

http://www.youcaring.com/medical-fundraiser/caring-for-callie/125048

We appreciated all the prayers and financial contributions that so many people have sent our way. Without the support of others, these trips would be almost impossible for our family.

Wednesday, January 1, 2014

Hello 2014

 Hope every had fun bringing in the New Year....we look forward to the New Year and look forward to all the wonderful things God has in store for our family.

Here are some pics from Christmas :-) Callie made a full recovery by the time Christmas rolled around. Praise the Lord! She was able to enjoy all the yummy food and of course opening the millions of gifts she received ;-) We are thankful for all we were able to give her this year.






2013 was a pretty calm year for our family, Callie mainly battled with her Cyclic Vomiting Syndrome but overall was healthy and  remained stable heart wise. She grew in height and matured so much in 1 year she is more like a teenager than a 6 year old. LOL kinda scary at times ;-) She started Kindergarten and is excelling wonderfully academically. Her new obsession this year is "horses" her whole world revolves around them! As of right now, she is going to be a horse trainer when she grows up. Thankful for a quiet year at home and enjoying our sweet girl!

Bring on 2014!!