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 23, 2013

This past week...

As I posted before, Callie has been struggling with fevers since last Tuesday. We made it home on Friday morning, where she continued to spike fevers and was just not doing well at all. On Saturday evening her fevers took a turn for the worst, hitting 104.5. Scary!!!!! I took her to the ER where they tested her for the Flu/RSV and checked her white blood cell count. She was negative for both Flu & RSV and her white blood cell count was totally normal just like when they did blood work on her in CA. They admitted her overnight for observation since her fevers were so high.

In the hospital she continued to spike fevers all night. She received two IV rounds of antibiotic and was looking better the next morning. She was discharged that afternoon and sent home on oral antbiotic. Callie continued to spike fevers into Tuesday and so far has been fever free today. So, where are these fevers coming from you might ask?! Cardiology here and the docs in CA, all think it is sinus related. They think when Callie went in for her heart cath her sinus infection was not fully cleared up and from being intubated and everything it irritated and stirred that bacteria up in there. She also had fluid behind her ears on top of them being red and a nasty cough which is a combination of the normal cough she gets with her sinus infection and then a cough from her cath. Her head is basically one BIG infection, poor baby:( She is coughing so hard it is making her so tired, that coughing takes so much out of her. On the bright side, her lungs looked good on the xray, so she is good as far as that goes.

As far as her heart goes, CA wants her BLUE and her oxygen in the 60's before she returns. These symptoms will mean she has outgrown her shunt and then it will be time to do her Glenn procedure. So, we are just taking it month by month and wait for these symptoms to occur. Her surgeon, Dr. Hanley, doesn't not want to do the procedure till she has outgrown this shunt. There is no reason to touch her if she is doing well. I am thankful for a surgeon who always has Callie's best interest at heart and does not rush into things just because it is convenient. Callie's next trip to CA will forsure hold a surgery for her but we are very thankful that it could be 6mths or more before she will need that done. God is good, grateful that his plan is greater than any plan we could ever have for ourselves!

Please continue to pray for Callie's recovery from all this nasty sinus stuff and she can make it thorugh this flu and cold season without catching anything!!!!

Thursday, January 17, 2013

Fevers:(

Callie has been spiking fevers for the past 24 hrs. She was discharged earlier yesterday morning and then by 230pm she had spiked a fever. They had her return to the hospital that same evening to be admitted. We got there around 630pm, they took some blood to check her white blood cell count and to send cultures. Her white blood cell count came back fine so they allowed her to go back to hotel and as of this afternoon her cultures still have not grown anything. With that being said, we were back at the hospital this morning because she ran a fever all night:( They saw her in clinic to just recheck her. Her right ear was apparently very red. So, the thought is that might be why she has been spiking a fever. She issued Callie antibiotics and sent her on her way. To back track, Callie can only take Tylenol because she is on  a blood thinner and she doesn't respond to it. So, that was another reason I was having such a hard time getting rid of her fever. We have backed off on her blood thinner some so we can give her Motrin instead of Tylenol. She had Motrin earlier today and after about an hour her fever was gone. But, just in the past hour she has spiked another one.

On top of everything, Callie's cyclic vomiting syndrome has started back full force. Needless to say, she is vomiting A LOT:(

Thank you to everyone who is praying for Callie and for everyone who has called or texted to check in on her . I apologize if I haven't responded to everyone. I am exhausted and running on very little sleep. So ready to be home. We hope to make it home Friday sometime.

Tuesday, January 15, 2013

A Long Wait In Recovery!!

Callie spent over 5 hrs. in recovery waiting for a bed up on the 3rd floor:/ Finally by 930pm we got up to the room. Callie's cath went great, no complications and her results were the best they could have asked for:)

As for surgery, the word right now is that she will not be having surgery this trip. They want to give her some more time. Her pressures were perfect to proceed with her Glenn procedure but the surgeon feels like it would be better to wait a little bit. The hope is we won't have to come back for about 6mths but if her oxygen dips before then, we will be back sooner.

Callie is resting right now, watching "Tangled" and we hope to get some rest tonight. Not so sure how much rest we will get but we will try;)

Thank you for all the prayers, the results are promising and when the time is right, Callie will get her Glenn:)

We hope to fly home on Wednesday sometime! YAY!

Monday, January 14, 2013

13th heart cath started......

My brave girl was ready for this heart cath this morning. She kept asking me while I was getting ready, "Mama, is it time to go yet?" She was a trooper the whole way to the OR. Her strength is amazing!!!
My prayer today is that all goes well and whatever is best for Callie will be done. We know the Lord is with her every step of the way and she is in the best hands possible.

I will update as soon as I can. As of right now, they are still in there looking at everything, they have been at it for almost 2hrs. now. It could be as long as 6hrs, so just trying to be patient :/ Thank you for all the prayers and words of encouragement. Keep praying, Callie can never have enough prayer warriors:) 



Friday, January 11, 2013

Hello California

Callie and I arrived late last night in CA, our plane was delayed a few times so we arrived later then anticipated. But, the flight was good and everything went well.
Callie had her pre-op today and all went well. We were in and out pretty fast, since they know Callie and we are no stranger to all this. The docs were so excited to see Callie and thought she looked great. Callie gave them a big hug...if my daughter has to go through all of this, I am glad she is somewhere that cares so much for her. So, now we wait for Monday. Callie is scheduled for 1115 so it will be evening time for those of you on the east coast before Callie is done. I will update as soon as she is done.
                   What better way to end the day than eating cupcakes for dinner:)