Calli had an appointment at the beginning of December and her oxygen levels went from 81 to about 90, we were so excited!! We don't have to have oxygen at night anymore YEAH!!! She had a wonderful Christmas. (She even attended all the Christmas Parties, now that's huge!!)
She wants to say "hi" to everyone and Thanks a million xoxoxo, Calli and her mom.

I am doing so good! I had so much fun on Halloween. I go to the doctor's on the 13th of November and hopefully I won't have to eat low-fat any more. I hope the doctor says that I don't have to sleep with oxygen anymore, keep your fingers cross. I'll let you know how it goes.
Thank you so much to everyone that cares about me and loves me.

WE ARE ACTUALLY HOME!! Didn't want to update the blog until I had a few good days behind me. We left on Thursday afternoon and we went to the Halloween store so I could get my halloween costume (see the picture) I'm going to be a black cat!! I am so happy to be home,playing with my brothers, sleeping in my own bed. I go back to the hospital on Wednesday the 14th, just for a check-up( we are hoping everything will look good.) I still have my oxygen all the time and have to eat a low-fat diet until Thanksgiving. But, I'm okay with that just as long as I can be home. We want to thank everyone that has supported us through this. You have helped more than words can express! WE LOVE YOU !! Princess Calli

Today, Wednesday October 7th they pulled my chest tube out!! I hope all goes well. They will check my x-ray in the morning and hopefully there is no fluid building up.We are just watching it now, so we don't know exactly when we will be coming home. HOPEFULLY THIS WEEK! I still go to the playroom, go on walks and Cache comes and plays with me.

Okay, we have learned that you don't think you're going home until you are actually in the car entering your driveway. Saturday morning my chest tube started draining again (about 200 cc and then some)So, we are still in the hospital, room #3089 100 Mario Cappechi Drive, S.L.C, Utah. We now are trying a different medication to hopefully dry up all this drainage. Monday we didn't have any drainage but, we have to wait and see. Chest x-ray's in the morning might tell us more (simply just waiting to see what happens.) We have learned to be patient and just wait and see what tomarrow brings. Thanks for sending the positive encouragement!!

My chest tube hasn't been draining, they think it might be stopped. YEAH!! They keep checking when I go down to chest x-rays and it still looks okay. If tomarrow morning it looks okay they will take out the chest tube. We are hoping and praying everything goes well and maybe I can come home on Sunday or Monday!! I hate taking my medications but, when they tell me it will get me better and I will be able to go home sooner ,I swallow them right down.
I painted a birdhouse yesterday and I can't wait to go home and hang it from our tree. Thank You everyone for the encouraging comments, they really help my mom. We are very grateful for everyone willing to help lighten our load.

On Sunday hundreds of Harley-Davidson bikers rode to the hospital and parked outside, some of them came in and brought toys to all the kids. I got my picture taken with one and they gave me princess shoes ( I love them!) On Sunday my chest tube drained about 30 cc but, through the night it didn't at all. The doctors say that we will have to see how Monday and Monday night go to determine if I can start eating my low-fat diet again ( every day I ask to eat and I am hungry,even though I am being feed through my IV) When I do start to eat, they say we will have to monitor if the fluid starts draining again. If it starts draining again we will have to go to the alternative method. Please pray for me because we don't want to do the alternative method.
I'm trying to be happy and keep my mind busy. I do crafts, play with toys ,draw,go for lots of walks in my wheelchair. Thank you, thank you for everyone's prayers.

Today Calli had a pretty good day, except she keeps asking for food. She hasn't eaten for two days. She is being fed through a IV. She liked the card the Primary made for her,we hung it on her wall. ( Thank You for sending happy things her way) We are trying to keep her busy so she doesn't have to think about food. We hope this is getting better but we can't be sure for another day or so. Keep praying for Calli. Thank You

Calli went back into Intensive Care this morning. They inserted another chest tube and drained 300 cc and had to put in a PICC line (Central Line Care). A PICC line is a long flexible tube that is inserted into a large vein in your arm and then threaded into a large vein above your heart. They inserted the PICC line so they can feed her through it(when you eat the fat in your food produces this fluid called "chyle" that keeps accumulating in her chest so, hopefully this will dry up this fluid instead of using diuretics. We pray that this works because we do not want to go to the alternative step.
We can't express enough how much we appreciate everyone's concern, prayers and fasting. Thanks for your encouraging comments. Love the Clark family

Calli is sick of hospital beds, so now she is sleeping in the wheelchairs. We thought we could go home today but, when we went down to chest x-rays this morning they spotted more fluid build up. This is not what we wanted to hear. This means we have to insert another chest tube to drain the fluid ( so, we are starting all over) Tomarrow morning we will go back to intensive care.
Please pray for Calli because this is a very painful process.Thank You for everyone's love and concern.

I don't think my chest will ever stop draining!! Still waiting and hoping because this chest tube is so painful. The nurses and staff do alot of wonderful things to keep me happy. I was a doctor and helped my hospital buddy get better, I even got to put a IV in him ( somebody got one and I didn't YEAH!!!) We keep jumping these hurdles, one by one.

My chest tube is still draining and I am on two different diuretics to dry it up. Hopefully it will get better. Until then I will continue to take my drain tube and container for walks. I wake up every morning at 5:00 a.m. to get poked and they take my blood (this makes me very mad, and I am not happy) then at 6:00 a.m. they put me in a wheel chair and take me down to the first floor where I get my chest x-rayed. I hope I get better soon.

Today is Saturday and we had a pretty rough day. I have so much pain from this drain tube that I have to be on morphine and lortab. They think it is refered pain that is making my heart hurt. I sure hope I get it taken out tomarrow. It's hard to even cry or move because I am in so much pain. Hope tomarrow is better.

Medical terminology - Chylothorax is the build up of chyle (kile), a milky white fluid, in the space surrounding the lungs. This makes it difficult to breath. Chyle is a normal fluid produced in the bowel when we digest food. It is a milky- colored when fatty food or drink is digested. The chyle fluid is carried around the body by lymphatic vessels. These are much like the network of blood vessels throughout your body. The lymphatic system carries fluid, fats, proteins, and infection fighting cells. The lungs are surrounded by several layers of protective lining called the pleura (plur-a) surround the lungs. Fluids can collect between the pleura layers( called the pleural space) A chylothorax happens when the lymphatic system starts leaking chyle fluid into the pleural space. The fluid pushes on the lung, making it hard to breathe.
If you have had heart or chest surgery, a lymph vessel may have been injured by surgical instruments or by muscles moving. So, this is what we are doing back at the hospital, we are dealing with a Chylothorax.

Gosh darn it, we are back at the hospital. Calli had alot of fluid build up around her right lung(900 cc that is about 1 liter in her little chest cavity) It is a side effect that can happen after having this type of heart procedure. She wasn't doing to well, when we came for her check up and they admitted her into intensive care right then. (Poor little thing) Today ,thursday she still has drainage but it has slowed down. It has a milky color to it, which can only clear up if she is put on a low-fat diet ( she loves Mcdonalds happy meals so this will be challenging)
She is starting to feel better, look better,breath better. Heart Surgery is a rocky road to go down and you have a few set backs. It is okay, we will keep moving forward and jumping the hurdles.

We are home and Calli is starting to feel like herself ( or like a doggie, named Koda) She still has her bad days and nights when she doesn't feel good. She is on oxygen when she sleeps or naps to give her heart a rest while it is recovering. She gets tired easily and needs alot of rest. But all in all things are going well. We appreciate everyone's meals and fun gifts for her , it will give her things to do. She can't ride her bike or play on playground equipment, swings or trampolines for 6 weeks. (that's a long time for a little kid) I am so grateful to our Heavenly Father for giving us our little Calli and wonderful doctors that let us keep her with us. I was so overwhelmed when I heard that Paul Cardall recieved a heart last Wednesday. He is truly been blessed through family and friends faith and prayers. When we met him we were honored. His family was very polite and his mother started to talk to me. She was giving me great motherly advice. She told me to let Calli do everything she wanted to do and her body will know it's limitations. Let her live!! I was grateful for the advice and admired her for her love and sacrifice she has given her 36 year old child.

Saturday night I went to the playroom and got to paint and draw, play in the kitchen.(I finally enjoyed something at this hospital. It's Sunday morning and they say I can go home, we are all so excited!! When we were leaving we ran in to Paul Cardall, the musician and song writer who is waiting for a heart transplant. He is 36 years old and has had the same surgeries as I have. He was 14 when he recieved the Fontan procedure that I just had. We met his wife and little girl named Eden. I hope he gets a heart soon, so he can go home with his family. ( Everyone out there we need to remember him in our prayers) I am leaving the hospital so I can go home and be comfortable and really heal. Thank you everyone for your love!!!

Last night I was very irritable so, mom and I went for a walk all over the hospital until midnight.
Finally I went to bed and ended up waking up to having to get my blood drawn, chest x-rays, and a little more morphine so they could take out the last chest tube. They pulled out the last chest tube and it feels so much better. I finally started eating fishy crackers ( the only thing that tastes good) I really love pretending to be a dog, but when "Rusty" the real dog came to visit,I wasn't to sure about it. He had pretty "auburn" hair like me! I finally got sick of my hair being in french braids so, of course I pulled them out ( looks like I'm starting to feel like myself again.)

Friday sept. 4th Aunt Rhonda brought my brothers down to see me.
Yeah!! this helped me and all the fun things in my care package. I loved watching my Barbie Thumblina movie and I tried some of my treats. Mom has enjoyed her magazine, lotion and some treats too. (just what we needed for a day like this) Thank You!!!!! I know tomarrow will be better.

I decided I didn't like my hospital bed so now I lay where my mom sleeps ,( it's alot better it's by the sunshiny window) Today friday Sept. 4th was a very hard day. They put me on morphine this morning so the doctors could take out 2 of the 3 chest tubes. This was soooooo painful that it affected me the rest of the day. Finally they got me out of bed and took me for a walk outside, it didn't last long. (I feel miserable, I won't eat and medicine makes me not myself.)

Hi everyone!! guess what I am out of the pediatric intensive care unit and onto my own room to recovery!! I don't have to be on morphine anymore for pain, just loratab and ibprofun. Still not very happy and I really don't want to eat anything.
I still have all 3 of my chest tubes in, they are still draining. My chest tubes are awful they cause me so much pain. I can't wait until I am well enough to take them out. I am watching Shrek and Bolt so, that keeps my mind off all the other stuff. Thanks everyone for the calls, comments and prayers.

Thank you for everyone's thoughtful comments. Calli is doing better today, she still has alot of pain. Thay have been able to take out her neck IV and her cath, every little thing means progress. Mom was able to hold her and love her, this made us both happy. Hopefully today (Sept.3rd Thursday) they will be able to take her out of ICU, depends on how well her chest tubes are draining. (that is still pending) All in all she is doing well for someone that has gone through major heart surgery. Primary children's is so great, she get's basically anything she wants (rootbeer slushy's, strawberry smoothies, popscicles, movies, disney channel, games,prizes,stickers and the list goes on.)

Robyn, just a note I forgot to tell you, click on the comment on the bottom below your post and you can read all your friends messages. Click on view all so you don't miss out we all LOVE YAH!!
love your friends :) WAY TO GO CALLI!!!

Calli came out of surgery, they took out her breathing tube and pace setters for her heart(this is a very good sign) We met her in the PICU, she woke up enough to tell us she wanted a popscicle.
(someone get this little girl a popscicle!!!!!) She still is in alot of pain and has three chest tubes draining the fluid out of her chest. When we met with the surgeon after the surgery he explained everything he did and said everything went very well. Now we need to let her heal.
We are very happy parents, no, no, thrilled that we have Primary Children's Hospital.
We will be forever grateful for Dr. Kourteas and his excellent heart surgery skills.
Today was a good day! Thank You for everyone's concern and all the love you're sending Calli's way.

Calli's Surgery

We had to call Carla and found out all is well and Calli woke up and asked for a popsicle!
Good News!!! Love, Janet and Gina :)

Well today is the day. We took Calli in the hospital still asleep and when she woke up she was trying to make sense of it all. They gave her fun toys and coloring paper so she was happy and content. We dressed her in her special pajamas and waited in the waiting room. The anethsiologist came in an gave her some medicine to make the wagon ride easier (They need to give some to the parents but they don't) They got all her lines hooked up by about 10 a.m. and then made the incision at 10:30 then at 1100 they were getting ready to put her on the heart-lung machine. This is when all those prayers take into effect, thank you

Hi we made it down and got our camping spot ,right in the parking lot.
Calli is thrilled about it ( except we don't have a campfire, darn it)

She had all her pre-op work done and we met with the surgeon. He did the other two open heart surgeries and made us feel really good what he will do tomarrow.
He won't have to go into the main part of her heart, he will put a gortex shunt into the lower chamber of her heart up into her pulomanary artery so the blue blood in her lower body will get oxygen from the lungs(I know heart 101.) After this she should have better oxygen levels and better coloring in her skin. She is doing great and is as lively as ever( playing house in the trailer)
We will go in at 7:00 and they will probably start the surgery at 8:30. It will be a 5 hour surgery .
thank you everyone for your prayers and support WE LOVE YOU!!!

Calli is a cutie!

Princess Calli's Blog

We started this blog for Calli's family and friends. A place to read updates on Calli's progress and post comments for support and encouragement.



"Life is not about waiting for the storm to pass, it's about learning to dance in the rain."