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.

Saturday, August 27, 2011

Free at Last:)

Callie was discharged yesterday...Hooray! I was so happy to get her out of there and I know she is just as happy. Callie is doing well, she is very sleepy and still trying to get her strength back. Right now, she is sleeping the majority of the time. I know it feels good to be able to sleep and not have someone bugging you every 2 seconds for blood or to take your bp.

Her bp remains under control with 2 bp meds. One every 12hrs and the other every 6hrs. She was weaned off of oxygen but seems to be requiring some oxygen when she sleeps. Once her body recovers and adjusts to the new central shunt, she should level out her oxygen saturations and not desat when sleeping.

She doesn't want to eat and has been having a time with tummy issues. Poor thing! I'm positive it is from all the medications she is on making her feel so yucky. If anyone can lend some advice to any over the counter meds for upset tummies in kids, that is okay to take with a butt load of medication....please let me know.

Callie has blood work and a chest xray on Monday at LPCH, then on Wednesday she has a follow up appt. w/Cardiology. Usually, we do not follow up in Clinic here but since Callie has had so many major events happen this hospitalization, I did not feel comfortable flying home without them checking her out one last time! Then, hope to fly home a few days after:)

Thank you to everyone for all of your emotional support, generosity and prayers during this trip, we are so grateful! God has blessed us with some pretty amazing family and friends, not sure what we would do without all of you! Big hugs to all.

Sunday, August 21, 2011

I was able to get Callie sitting up in a chair today, she did this once the other day but not since. So, it was good for her to get out of the bed. In the next day or two, I am going to get her in a wagon and take her for some sunshine;)

Last night, she spiked a fever but never spiked another one. As a precaution they started her on an antibiotic. She went for her swallow study and she does aspirate, so now she can only have thickened liquids. But, they want us to repeat the study in 4-6wks, everyone believes it is only temporary. Fingers crossed!

Blood pressure continues to be an issue but is more under control today and they are going to up her next dose of bp med. So, I think in the next day or so it should be under control.

Now, another mystery.............Why is Callie requiring so much oxygen? Her xray continues to improve, but her requirement for oxygen is still the same. Please pray this resolves itself and we don't have to think anymore about it.

Your prayers are still needed, she still has the couple of hurdles to get over. This trip has been so mentally draining, I can't even begin to find the words to describe it.

Thursday, August 18, 2011

Callie had a good day today, she slept well last night. I'm not sure how she gets any sleep in the ICU, it can be so loud at times! This morning I fixed her hair, put a pretty new bow...she wasn't thrilled with me brushing her hair but was happy to have me put the bow in:)She did some coloring today and watched lots of movies.

They are playing around with her blood pressure medicine, she will be going home on bp meds until she returns for her next cath. They started up her feeds again today and she was able to eat a little cereal and ice chips. She will possibly be going in for a barium swallow to rule out if she aspirates when she swallows. Everyone believes she will be fine because she has a good strong cough and her vocal cord should return back to normal working in order in a matter of time. ENT believes it is only temporary:) YAY! Her one chest tube is still putting out a fair amount, I'm praying it slacks off and she can get that out very soon. She is still on high flow oxygen, they are working on weaning that down.

Will leaves to go home on Friday, so that sucks:( I'm hoping Callie does okay with him leaving, hopefully she won't mind too much.

Wednesday, August 17, 2011

11th Heart Cath

Callie's cath went well, she did not have any issues. Praise the Lord!! They were able to balloon open the area that was blocked or pinched, however you may want to word it. However, her blood pressure is stil high, so we will see what happens.

Hoping Callie sleeps well, so I can get some rest too:)

Tuesday, August 16, 2011

Prayers Please...

Things have been such a rollercoaster this trip. Will and I are so physically and mentally exhausted. We feel so defeated and helpless when it comes to Callie. Poor baby has been through so much and its just not fair.

So with saying all that, Callie has to go in for a heart cath at around 1pm California time to see if they can put a stent in a narrowing she apparently has that is causing her high blood pressure. This is really an odd situation because her blood pressure is only high in one arm and all other extremities register a normal bp. This is because where the narrowing is, I haven't been able to talk with Dr. Hanley just yet so its a little hard to explain. Dr. Peng will be doing her cath and she is going to check out everything. This cath is consider more risky because she is so fresh out of surgery so please pray that everything goes GREAT!

Callie is a little more talkative this morning...with that said, they looked at her vocal cord yesterday and it is paralayzed:( I'm praying and thinking only positive thoughts that it will only be temporary.

All I ask, that everyone prays for my baby and everything goes well with no complications and we get positive news.

Monday, August 15, 2011

Moving Along...

Callie had a little set back, so she was extubated on Friday but then on Saturday morning had to go on CPAP because her right upper lobe of her lung had collapased some:( Today she was able to go back on high flow oxygen for part of the day and then tonight was put back on CPAP just for overnight. Then, in the morning if her xray looks better she will get rid of the CPAP all together and go back to high flow.

She was able to get 1 of her chest tubes out! YAY! We are slowly making the transition from IV meds to oral meds. Her gtube feeds were started back today and hopefully she will continue to do well with that. Making progress, so thankful!

There is still question of what is going on with her blood pressure. She has been on 2 IV blood pressure meds since Sunday to control it. Anytime the docs would try to go down on them her systolic (the top number) would eventually make its way to 150 or higher! So,last night they were able to get her off of 1 but had to go to the ma dosage on the other and add a oral bp med. They don't really know what is causing her bp to be so high. Tomorrow she will have an ultrasound to check her kidneys to make sure there is no clots, apparently if you have a clot that can cause high bp. But, they don't think she does because she is peeing well and her blood work looks fine. Guess we just haveto wait and see. Please pray it is nothing and a simple solution or just resolves its self.

Callie will also have her left vocal cord looked at tomorrow by ENT to see what the status is with that. Having been down this road before, I think her vocal cord is fine or could be just temporary because her voice is quiet but not too bad. I think it will be fine.

Callie has been sleeping a lot today, she has been coughing a lot due to her lung situation and the medication they are giving her for her breathing treatment. So, all that coughing wears her slap out. She also is very quiet, doesn't say hardly anything. She looks at you like, what the heck!?! I feel so bad, I just want to scoop her up and get her outta here. But, hopefully not too much longer. She is doing awesome and everything is heading in the right direction:) Thank you, Lord.

Please continue to pray for healing of her little body and for her stay not to be much longer in the hospital. Recovery is so much better in the comfort of home:)

Thank you everyone for your continue prayers and support. We are so very grateful, this has been a tough trip and having all the support makes it a bit easier.

Saturday, August 13, 2011

Extubated :)

My little trooper was extubated today:) She did well, just very sleepy and has been resting well. Callie is on high flow oxygen for now and will be weaned to regular nasal cannula in the next few days. Her blood pressure has been a little hard to control and they aren't exactly sure why. Should get more clarification on that tomorrow, thinking it probably has something to do with her surgeries on Sunday. Her neck is also swollen which is moving don her arm, that is most likely due to her central line in her arm. Again, we will be talking about that tomorrow as well.

Overall, she is doing great and has overcome Sunday's events incredibly well!

Thank you to a dear friend, Victoria for stopping by the hospital today:) It was nice to see you and I hope to meet Miss Moriah and Jadon very soon;) We love you, Nelson Family!

Thursday, August 11, 2011

A Good Day

Callie had a quiet, awesome day:) No major changes for Callie today...the docs are taking everything very slow. They were able to come off of her Morphine drip a bit and come down on her ventilator settings some. They are working towards extubating her very soon. There was talk of possibily tomorrow but I'm thinking it might be more like Friday. We will just haveto wait and see........baby steps!

I am very thankful for this day, she was opening her eyes some and answering questions by shaking her head yes or no. Its nice to be able to communicate with my baby some, I miss her loud, silly self. So, today was good:)

Thank you everyone for your continued prayers and support.

Tuesday, August 9, 2011

Urgent Update

Callie has had a lot going on since Sunday morning. Will and I received a phone call around 6am Sunday morning to head to the ICU ASAP. Callie around 4am had started to pour blood out of 1 of her chest tubes and out of her incision. She was taken back to the OR where Dr. Hanely did emergency surgery. A long story short, Callie's chest tube ripped her Aorta!!! From what I was told, it is a very freak accident. But, I believe the chest tube made its way up there near the aorta due to all the movement she was doing when they couldn't get her sedated. So, she was stablized and brought back to the ICU. Dr. Hanley stitched the tear and all was well.

Our nightmare occured again later Sunday night at 930pm. The same thing occured she started bleeding out, she was opened up bedside by Dr. Hanley where he explored the problem. It was then discovered she had another tear in her aorta! He believes from all of her surgeries, scar tissue and then the chest tube incident it weakend the aorta tissue and thinned it out. So, instead of stitching this tear, he put a patch over her aorta to prevent this from happening again!

As of right now they have her paralyzed as a percaution to make sure no more bleeding occurs. As soon as they know that patch is set, then they will allow her to start moving again! She is having a few issues with her blood pressure, so she has 2 meds controlling that. Overall, things as far as meds and such have not change since my last post.

This has been the hardest and scariest past couple of days I have ever been through in my life and I feel so helpless.

Please say a prayer for Callie, that the Lord will heal her and there will be no repercussions from all the tramua her little body has had to endure.

Thank you Lord for being with our little girl through all of this and blessing us with such an amazing surgeon! We love you Dr. Hanley!

Saturday, August 6, 2011

Post Op: Day 3

Not much happening with Miss Callie. She has been a real challenge to keep sedated, but right now she is resting very nicely. If they allow her to wake up she is not the greatest patient:/ She basically tries to keep up and walk out, which is kinda hard to do when your hooked up to a ventilator! HAHA! She is a mess, I wouldn't have it any other way =)

The hope was to extubate her tomorrow but not too sure if they is going to happen, now. Her xray and oxygen saturation looks great, breath sounds are great but she is still having just a little trouble which the docs tend to think it is because of all the extensive work that was done on her heart. Basically, she just might require another day or so of rest. Which I am completely happy with....we will just continue to take one day at a time.

I am so amazed when I look at her, her strength and determination is unbelievable! Looking at Callie during these times and all she is faced with, she really reminds me how powerful our God is and nothing is impossible. Having to watch her lay there kills me, I want so badly to hear her sweet little voice. But.....on the other hand she would probably be yelling at me so it might be a good thing she is knocked out right now!! LOL Because man, that child has one heck of a temper and a hard head=)

I had a doctor tell me today, how exicited Dr. Hanley was when he finished Callie's surgery. This is such a HUGE step in the right direction for Callie and many were not sure if she would ever get this far. She is not out of the woods yet but we will continue to pray and take one day at a time. I think I have prayed every night since the day she was born for God to perform a miracle and heal her. Well, I think I'm living that miracle!!

Thank you Dr. Hanley, for all you have done for Callie and continue to do for her. We love you!!!!

Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Matthew 19:26

Friday, August 5, 2011

Post Op: Day 1

Callie had a very uneventful day, she has remained very stable! Today was all about keeping her comfortable so she can continue to rest and heal.

We did find out on rounds this morning that she might possibly have left vocal cord paralysis from her heart surgery =( Your vocal cords are in such close proximity to your heart, that they can be in danger during any heart surgery. So, it was reported from Dr. Hanley to keep an eye on the left vocal cord after she is extubated because apparently he was very close to it and feels it could be damaged! This makes me sad but I know it may turn out to be nothing! And it also could only be temporary which is what I pray for. Her 2nd heart surgery at 8mths old she suffered from right vocal cord paralysis and it turned out to be temporary and she recovered just fine from. We won't know more until she is extubated and can evaulate the situation. But, please pray with me that it turns out to very minor and temporary.

I would like to say, thank you to Lisa a friend of one of our close heart families, The Williams Family. The have an adorable little girl Reagan that I have posted about before and we met here in CA at RMH way back when. Long story short, Lisa brought Will and I a huge amount of groceries today and we are so grateful. Thank you so much Lisa, it means a great deal=)

So, it was a good day for Miss Callie and I am off to bed to get some much needed rest.

God is Good!

Thursday, August 4, 2011

So far.....

Callie is doing well, no real issues at this point! Her blood pressure was a little high in the evening yesterday but has come down some and they seem to be happy with that.

Nothing else to report, she is still zonked out of her mind=) Which I'm happy about because I know she is resting comfortably.

Will update soon!

Wednesday, August 3, 2011

Surgery Completed!!!!

Hi Everyone! Callie is done, praise the lord. She did awesome, the Lord was with her today and we are so thankful to each one of you who prayed for our little girl. Callie handled the bypass machine just fine and everything was done successfully without any complications.

Dr. Hanley removed her 2 central shunts and replaced them with one main shunt. He removed her lower left pulmonary vein away from her aorta and also removed the stent from her upper left pulmonary vein. So, both left pulmonary veins have awesome blood flow now. He is confident this upper vein will stay open now and hopefully there will be no further complications with it! Fingers and toes crossed=)

The objective of this surgery was to help get her pressures in a range that will be safe for her to have her Glenn. So, we will return in 6mths for a heart cath and if her pressures have lowered then and everything looks good then at that point she will have her 7th open heart surgery The Glenn!

I am so relieved and grateful right now=)

I will update after we see her!

Surgery Started....

Callie was taken back to the OR around 8am and we just got a call that they were making the incision at 10am. I will update was we get updates.

All smiles and giggles

Callie had her pre op today that started bright and early at 730am. She was so very happy to have her picture taken (echo and xray) Callie helped the echo tech get everything ready for echo. She was as good as gold:) Then we met with anesthesia she was all giggles and smiles for them! Doing anything she could do to be silly, little Miss Personality.

We haveto be at the hospital at 630am, Callie is the one and only case tomorrow. So, there shouldn't be any delays. I will do my best to update during the day to keep everyone up to speed.

Thank you to everyone who has Callie on the prayer list at Church and praying everyday for her. Please continue to pray for her safety and successful surgery.

Love to all.