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.

Sunday, December 26, 2010

Wishing everyone a Happy New Year!


Hope everyone had a Merry Christmas! Callie had a blast this season, she really understands the Santa thing this year and was so exicited to leave him cookies and milk:)

Callie is doing wonderful, growing like a weed. Still only 22lbs. but as long as she is growing that's all that matters! Latley, it seems everyday she is saying a new word. She is starting to come along with her speech, she has made so much progress since this time last year. So, we are very happy!

She maintains stable from a heart standpoint and will return to California in the end of March, possibly early April. She did have a breathing episode shortly after returning from California in October, we are praying that this was NOT a sign that the upper vein that has a stent in it did not hold. Her stats remain stable but there is no way of telling about that upper vein other than through a cath, so we will wait and see.

Thank to everyone who constantly lifted Callie up in prayer and offered support to us this past year. We will never be able to express how truly grateful we are.

We are hopeful that 2011 will hold great things for our family and most of all Miss Callie. Praying for that little twist of fate that will get her the surgery she needs, inorder to get a break from all this for a bit.

Hope everyone has a Healthy and Happy New Year!

Thursday, October 14, 2010

Results of cath

First of all, sorry for the lack of posts but things have been hectic lately and it's hard to sit down and type when I'm by myself in California with Miss Priss!

So, Callie did GREAT with her cath, she was able to go to the general floor instead of the ICU after her procedure. It's been forever since we've went to the floor, she always required ICU the past few times. Thankful she did so well this time:)

Her cath results overall were good, she is stable and does not require a surgery right now. But, the left upper pulmonary vein that Dr. Hanley worked on in April was almost completely closed off again (NOT GOOD)!!! And the left lower vein is still being compressed, that isn't going to change until something surgical is done to fix it. A stent was placed in her upper pulmonary vein to see if that will work to keep the stubborn thing OPEN. Fingers crossed that it works. That vein has to remain open in order for her to be a candidate for her Glenn surgery that she so desperately needs.

Callie has been saying home, Daddy and Nana the whole time she was in the hospital, she misses everyone so much and I know she cannot wait to be back :)

We fly home tomorrow and will return to California again in 6mths for another cath to once again evaulate the situation.

These trips are only getting harder as she gets older in one way, but in the other she is becoming more and more used to the hospital, nurses, etc. And as a result she is an ANGEL when she is there and helps the nurses when it's time to take vitals and says Hi to everyone she sees:) She is something extraordinary and Will and I are so blessed to have her as a daughter.

Sunday, October 3, 2010

Trip #????

Well, we are off to California once again a week from tomorrow!!!! So, this is trip number.....well,not really sure, I'm starting to lose count we go so much!!! Callie has pre-op on Tuesday the 12th and heart cath on Wednesday. Please keep her in your prayers that all goes well and she only needs to spend ONE night in the hospital.

Praying hard for good news, Callie has been doing really well and looks great. Praying the same is true on the inside!

Please, also pray for Callie having to be away from her Daddy, it gets harder as she gets older, going without seeing him for days at time! She misses him a lot when we are there and it breaks my heart to see her cry for him! Pray that a room will be available at Ronald McDonald House and for safe trip.

Thank you for all the prayers and support, we are grateful for everyone who is praying for our little girl and the family.

Saturday, September 4, 2010

Happy 3rd Birthday, Callie Ann


Callie turned the big 3 today:) I can't believe my baby is already 3, time sure does fly. Callie is such a blessing and we are so very thankful for her.

Happy 3rd Birthday Bean, Mommy and Daddy love you so much! We look forward to celebrating many more Birthdays with you and watching you florish over the next years to come. You are such a beautiful, incredibly strong little girl and we know you are destined for great things.

Monday, August 9, 2010

Chunky Monkey:)


Callie had a cardiology appt. on Friday, at which she weighed 21 lbs. That's my Chunky Monkey, we all have been working hard to get to that mark!!! Lots of trips to Dairy Queen, McDonalds and any other high fattening places you can think of:) Whatever Callie wants, Callie gets!!!! I believe Dr. Lacey was very impressed with that 21 lbs.

Callie from a cariac stand point is doing well, the only concern is still her lower left pulmonary vien. But, we will see what is going on with that in October when we go to California for Callie's 10th heart cath.

Next month, my Bean will turn the big 3!!!!!!!!!!!! I can't believe it.....time sure does fly.

Thursday, July 8, 2010

July 2010 so far......

It's been a while since my last post, there's not much going on with us:) Callie remains stable and doing great, she actually has a cardiology appt. tomorrow. We are hoping for some weight gain. Callie hasn't gained any weight in about 6mths now:( Despite, even eating better since her last surgery. So, we will see what that scale says tomorrow!!!

We didn't really do anything for July 4th. Will had to work and Callie doesn't really care for the fireworks. So, Callie and I just sat at home and watched them on T.V.

The following day my Mom and I took Callie to a place called PUMP IT UP, it is filled with gigantic inflatable slides, bounce houses, etc. This was her first time and once she got used to it, she had a blast. She was worn out when we left, which is exactly what she needed:)

Enjoy the pics of Callie in her July 4th outfit and from Pump It Up.














Monday, May 31, 2010

Summer Time


Our family has been enjoying the HOT weather this summer, whether its at the beach, out in the yard, where ever it may be, just time together:)


Hope everyone enjoys their summer with family and friends! Stop a minute, to take in what's before you and be thankful. Sometimes it's easy to take for granted the everyday little things because time just keeps on rolling.

By the way, Callie is doing AWESOME:) Words cannot express what a GREAT feeling it is to be able to say that!!!!!!!!!!!

Friday, May 21, 2010

ALL BETTER:)

Callie woke up this morning and was just quiet. But, within about an hour back to being Callie:) Hasn't vomited at all today! Praise the Lord!!!! Praying whatever it was will stay gone. Looking forward to a day at the beach with Miss Priss:) Hope everyone has an AWESOME weekend.

Thursday, May 20, 2010

Can We Get A BREAK?????

Callie finally returned to her normal self, built her strength up and was eating GREAT:) Until, last Friday night.....she started vomiting. Each hour it seemed to get worse and worse. We just thought it was a stomach bug and it needed to run it's course. But, by Tuesday she wasn't really any better, still vomiting just not as bad and still very NAUSEOUS. I able to keep her hydrated because of her g-tube, otherwise she would be in the hospital. She has had NO fever or diarrhea along with this vomiting. Called the pediatrician yesterday to get her in to be looked at. So, today we went in at 9am, we were sent straight to Wolfson's for X-rays and blood work. She said, something is NOT right, you don't have a stomach bug for a week. She wanted us to got to the ER but I'm to familiar with the ER and I wasn't going to go sit for 6hours so my child could catch something else and then in the end for them to send me home with NO answers. Went to Wolfson's, had all the test ran and then back to the pediatrician where we sat for 2 1/2hrs waiting on results. Everything came back NORMAL!!! The next suspicion was a urinary tract infection, I guess sometimes, you can vomiting with those!?! Guess What???? NO UTI!!!!! In the end, we were sent home and to follow up in the morning to possibly have more testing, if she is not better. So far tonight she is the same:( As of tomorrrow it has been 1 week since this all started and we have no idea what is causing this vomiting. Praying it will STOP just as FAST as it CAME. Poor baby does NOT feel good at all, she just lays on the couch watching Mickey Mouse. Please pray for healing of her little body (and that nothing is seriously wrong), in time for the weekend and possibly a day at the beach. We have yet to got to the beach since we've been home:(

Wednesday, May 5, 2010

CT Scan, Discharge and Home

Callie had her CT Scan done last Thursday and the results were not surprising. In order to fix the issue she would have to be on bypass during surgery. So, we will return in October for Dr. Hanley to reevaluate the situation and go from there. This is an issue that has to be resolved in order for Callie to have her Glenn. But, we will take it one step at a time. We know Callie will get to her Glenn, one day:)

A few hours after her CT, Callie was discharged and on Saturday we flew home:) Callie was discharged with Methodone and Ativan, so for the first couple of days all she did was sleep. So, I cut her from every 6hours to every 12hours and what a difference. She is finally awake enough to get up and walk around:) The hospital was weaning her slowly due to her withdrawal issues but I think they had her a little too medicated!

Callie's color is sooo much better since her surgery almost 3 weeks ago. It's amazing!! She actually looks pink compared to the shade of blue she has been for so long. I can't wait till Callie gets her full repair, somewhere down the road! Her fingers and toes will be pink then:) In Addition, her breathing is no longer heavy and loud. That shunt definitely needed to be replaced!!!!! Now, we just haveto put some meat back on her bones:)

Can't wait to start going to the beach this summer with Miss Callie! She loves the sand:) We will enjoy our time at home over the next several months. Then, head out again in October for another heart cath. Thank you to everyone for all the support you gave us during this last trip to California. We are very thankful for everything and cannot say, thank you, enough.

Also, please keep 2 very special little girls in your prayers. Miss Reagan who went in for heart surgery this morning and is hopefully getting her full repair:) And baby Arden who is supposed to go in tomorrow for her heart surgery. Please pray that both of their surgeries are successfully and that there are no complications.

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.












Sunday, March 14, 2010

California...Again

I apologize for not updating lately, but I really haven't felt like it. To be 100% honest! Callie is doing okay. Hanging in there, I guess you could say. We will be heading back to California on April 9th. We've only been home just over a month. The first 2 weeks we were home, went great. Then, it was like someone flipped a switch and Callie's breathing got harder, she turned dark blue in her hands and feet again and her oxygen returned to the 60's awake. Exactly, how she was before the trip in January. She is also struggling to gain weight, she has shot up in height and her body can't keep up. Her appetite hasn't been the best latley, either:(

Will and I have been very stressed the past few weeks, just hearing Callie and how loud her breathing is, stresses us out. Being so far away from the one place that gives us hope and is capable of dealing with Callie, is very hard. We wish so much that we lived closer to California. If we are ever able, we will definitely be moving closer or to California. We can't ever get settled, when we haveto pick up a travel back to California every 2 seconds. Just like, we looked into buying a house, to take advantage of first time home buyer credit, etc. But, we soon realized we just aren't able because we never know what is around the corner with Callie, which makes our financial situation to unreliable to make such a commitment as buying a house. Which is fine. All I want, is for Callie to be thriving, happy and healthy. I am very stressed about this upcoming trip because there is a very strong possibilty of open heart surgery. Which I am very scared about. Explaining how I feel, is extremly hard because there is so many emotions that go along with Callie's health, traveling and all the unknowns that lay ahead of us.

Sorry for venting but I am mainly lost for words because I really can't believe what my daughter continues to be faced with. It really is the hardest thing in the world and I would do anything for it NOT to be her! Since, the day Callie entered this world, my prayer has been for the Lord to heal her heart and I will continue to pray that prayer every night to come. That's what I hold onto, that miracle waiting around the corner. In the same prayer, I thank him for blessing Callie with her health and where she is today. Because there are no words that explain, how grateful I am for what the Lord has blessed Callie with because I know there are many children and have seen it first hand, who have a lot more issues (health wise).

Please keep Callie in your prayers, she needs everyone praying for her. As of right now, we leave on April 9th. Fingers crossed, it stays that way. But, if need be, we will leave sooner. It all depends on Miss Callie. Callie also has a donations account at Vystar Credit Union to help out with things. Account #: 702811982 Will continue to update with any changes.

Monday, February 22, 2010

Thursday, February 11, 2010

Settling In....

Sorry, for not updating sooner. But, we have been trying to settle back into being at home and getting Callie back into her normal routine. Callie was having major seperation anxiety and wouldn't even sleep unless I was in her room. The past couple days she has been doing a lot better and I finally believe she is feeling much more relax. ( and not like someone is going to hurt her every 2 seconds, like in the hospital)

This last trip was extremly stressful and I am very thankful to be back home. Lots of different things were discussed in this trip. The first cath she had when we arrived, was not good as explained previously. They told us, to talk to the transplant team ( for a heart and lung transplant) because there was nothing more surgically her surgeon good do to fix her and they were almost positive Callie would not reach her next stage of surgery, the bi-directional glenn. The only thing they offered was that, they would do a heart cath as often as needed to sustain her, until heart caths couldn't help her anymore then look into transplant.

Then, she had the next cath and things looked more promising. I then spoke with her surgeon, who said, Callie is a special little girl with a very complex situation and continues to keep trucking along. He also stated, she is out growing her shunt on the right side and that will need to be replaced soon and at the same time he also wants to address the issue with the aorta,it is laying on the lower pulmonary vein and also try to surgical fix the upper pulmonary vein that keeps narrowing on her. This would be open heart surgery and she would have to go on bypass which they have never did with Callie before. This surgery would be another step, in hopes to get her where she needs to be to have her Glenn. Depending on how fast Callie grows and her weight gain will determine when this next surgery will be. Thoughts are it will be sometime in the next 6-8mths.

Callie does not have a schedule appointment to go back to California. Basically, when her breathing starts to get harder, that's when we head back out. Since you cannot see what is narrowing very well on echos , it's hard for the cardiologist to instruct us when to go. Just like we were not supposed to go in January but because her breathing was heavier we did and it is a VERY good thing we went when we did. So, we have no idea exactly when our next trip will be.

This trip was a rollercoaster of emotions. It never gets easy watching your child go through hell, if anything I believe it gets harder as they get older because they understand more. There's not a day that goes by, that I do not fear what the future holds for Callie. But, I try to face each day like Callie. Fearless. Because dwelling on what may be, does not get me anywhere. I've learned to take what the doctors say, with a grain of salt because things change in the blink of an eye. And they do not know the future only God does. It hard to understand God's plan for Callie at times, but I know it is an awesome one:)

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:)