My Dearest Kaidence,
Today is December 23rd, only 2 days before Christmas and we are celebrating your "First Angel Heart Birthday." Last year at this time you were in surgery and we were awaiting the arrival of your new heart. The moment they came and told me your new heart was in a beating will be a moment that I never forget. This gift was given to you by an amazing family who's little boy returned back to Heavenly Father. They wanted you to live and be happy and because of them you will.
Kaidence, you truly are a daughter of God. You have been blessed with many beautiful attributes that were given to you by your Heavenly Father so that you would be prepared for the trials that you would face in this lifetime. One thing that the nurses and doctors that cared for you for so long said about you, was that you were full of patience and grace. I am amazed by these qualities every time I think back to those days. It was like you knew that this was part of your mission in life and that you accepted everything about it, including the pain.
You are a fighter Kaidence, You never gave up. You are our "Fairy of Faith." We know that "Medically speaking", you should not be here. But we know that "Spiritually Speaking" Heavenly Father has his own plans for you. You have a big purpose. You have already taught so many about life. You have given so many HOPE.
Faith, fasting and prayer were some of the things that we could not have done without. I have spent many nights on my knees in a hospital bathroom pleading in prayer.
You have had many amazing blessing given to you by your daddy and others and I am starting to see those unfold before my eyes. You do have an "infectious love" and so many "have been drawn to you." You are also a "medical miracle" and are"living a happy, joyful and fulfilled life at home with your parents and your brothers." So many people love you, many of whom you don't even know yet. Kaidence, I want you to know that while you were sick so many reached out to your family and we have been blessed by hundreds of acts of kindness and service.
Kaidence, I am sorry for all the times that I have had to hold you down while doctors and nurses did what they needed to do. I know that you probably wondered why your mommy would let others hurt you like that. It would break my heart when you would just cry and look at me or when you would reach our you IV filled hands and want mommy to pick you up, but I couldn't. You were too sick . I knew that it took all your energy to lift your little arms to me, because you were so weak you would no longer fight or cry when they would come to draw blood and place IV's. You no longer had a voice for yourself but please know that your daddy and I have tried and will continue to be your voice.
Kaidence, you have two AMAZING big brothers who love you very much. They have made sacrifices but never complained because they love you. They have learned more about faith and prayer than most their age and they too recognize that Heavenly Father has heared their prayers for you. Because of what they have seen you go through and watching others at he hospital they have been blessed with the gift of compassion, prayer and understanding for others. They understood that mommy had to spend so much time with you because they didn't want you to be alone at the hospital. They have been so good to you.
Kaidence, you have carried a great spirit about you since your birth and now I know why. I would never trade all the sleepless night, sick tummies, the tears, worry, walking the hospital halls in my pj's, and my crash course in nursing for anything, because I get to love and care for you in this lifetime.
I love you my baby girl. Always embrace life and who you are. You are my miracle!
I Love you,
****UPDATE- I think we are going home today!!!!
Here is the link to her article from Sunday http://www.standard.net/live/news/159399
Tuesday, December 23, 2008
My Dearest Kaidence,
Posted by Kaidence's Mommy at 8:32 AM
Monday, December 22, 2008
I have had about two hours of sleep and my eyelids are so heavy, but I wanted to quickly update about this morning. So, I of course woke up feeling.....exhausted, frustrated, stressed and VERY emotional. I knew that this day was coming and I still have many emotions to deal with regarding Kaidence's transplant. I know that sounds very weird and I thought that I had dealt with all my feelings, but apparently not. Today was the day a year ago that we got "the call" telling us that our prayers have been answered and that Kaidence was getting a new heart. Everything happened so quickly from that point on and I have been so busy caring for her since that I haven't really been able to work through some feelings. These are good feelings of gratitude but also the ongoing heartbreak that I think I may always carry in my heart for our donor family. I am still just so amazed that someone would give us such an amazing gift. I have worried about our donor family so much lately. So needless to say I have some emotional stuff going on. I couldn't even walk to the cafeteria today without crying because every time I walked by, kind people were dropping off gifts for the children at the hospital for Christmas. We truly live in a very unique and kind community. Not all children's hospitals have this type of support.
Anyhow, as the day went on, things with Kaidence got better. She is still very tired but is getting better all the time. Every blood, stool, snot and urine sample sent out has come back negative, so that is good, but her CRP increased today to 22 (not good). Her echo looked fine. The medical team consulted with cardiology and let them know that the "illness" that Kaidence has, has been going around and that they have also seen elevated CRP's in others kids with the same symptoms. So the plan is that if no fevers occur during the night, we can go H _ _ _ tomorrow. What a great way to celebrate Kaidence's "Angel Heart" birthday tomorrow. To think, last year we were holding Kaidencce for the last time before she went off to surgery and now here we are a year later looking forward to spending Christmas together as a family. Thanks for your prayers, they are working!
Posted by Kaidence's Mommy at 8:13 PM
Well, it is just about midnight and we are still sitting in the ER. Mike has gone home because he has work tomorrow and no longer has any time off (it has all been used on Kaidence and his arm surgery). I haven't slept really in over 24 hours and am starting to feel it. Maybe my patience is starting to struggle a little. Kaidence's fever has finally broke and she has gotten some IV fluids. (gotta go. I'll update in a minute).
Ok, it is now 2 AM and I am officially very grumpy. Kaidence's CRP (the bodies inflammatory response) is very high. It should be below .8 but it is 18. So we know that something is going on somewhere but we don't know were. We finally got a room for Kaidence (I arrived at the hospital at 5:30 tonight). As we started getting situated in her room they told me that we had to move to the PICU because they could not do high flow oxygen on the floor. Hello, you can send an average mom home with a kid on high flow oxygen for night times sleeping but the trained nurses along with the respiratory therapist next door can't handle it???? Hospital protocol. So then after much conversation and getting our PICU room ready they decided to keep us on the floor. Well now they just came and said that they didn't know that Kaidence is on precautions because they did a respiratory panel. We have to wait for the "official" respiratory panel to be done, but all preliminary results are negative. So now we have to move to a dirty pod and chance Kaidence picking up who knows what but they have to call in a nurse and so we can't move until she gets here. Each person that walks into the room ask the same questions and does the same exam. Kaidence has had her ears examined about 5 times today (usually always being woken up to do so). I know it is always like this. We have done this enough to know better but you would think that when child hasn't slept since Saturday afternoon, they would let her do so. Our plan is to do more labs in the morning and check her heart. Battery dad, gotta go.
So It is 5 Am and I am Super Duper Grumpy and tired. We are finally moved, Kaidence is asleep and I am heading to bed. I will be up in an hour when they round at 6 AM. I need some sleep!!!!
Posted by Kaidence's Mommy at 6:00 AM
Sunday, December 21, 2008
We are off to our "house on the hill"....Please say a prayer for little Kaidence!!!
Posted by Kaidence's Mommy at 4:51 PM
I was really hoping to go to church today as a family and let Kaidence wear her beautiful Christmas dress but.......Kaidence is pretty sick. She has had a fever of 103.8 (much to high for an immunosuppressed kiddo) and is coughing, vomiting and not eating anything. She has cried all night and all day today. Even with Tylenol (we can't have Ibuprofen) she continues to have a fever. I can't give her all of her meds so we have to pick and choose the most important. We need your prayers please. If her fever continues and we don't have a answers as to why, we have been told by cardiology that we will have to take Kaidence up to PCMC ER. I don't want to go because I know we will be admitted for "cultures: and other tests and I don't want to chance another Christmas up at the hospital. The boys don't want it either. I hope that this is nothing too serious. Our WONDERFUL pediatrician is stopping by to take a look at her today and hopefully we can find something that can be treated with antibiotics at home. Please keep little Kaidence in your prayers.
-Also, Kaidence's story is on the front page of the "Standard Examiner" today and not last Tuesday for those that were wondering what happened.
Posted by Kaidence's Mommy at 1:43 PM
Friday, December 19, 2008
So finally, after almost exactly a year later we have answers as to Kaidence's Cardiomyopathy. Kaidence became ill July 2007 and we have not had any definite answers.as to what happened or caused it. I have asked the cardiologist many times in hopes of finding out what pathology found from her old heart after she was transplanted with her new one. It was sent out and we had hoped to find some answers. Cardiology would then in turn call her genetics doctor and was told that they have not heard any results. So Kaidence's WONDERFUL pediatrician decided to make a phone call to pathology. Apparently the results have been available since December of last year. They had the results 3 days after her transplant.
Kaidence's old heart showed NO evidence of a "Glycogen Storage Disease" and NO obvious eveidence that her Cardiomyopathy is genetically linked.
I am so excited about the results and feel so blessed once again to finally have answers. For the last year and a half I have stressed and worried about my boys. Would they get the Cardiomyopathy? Is it genetic? Should we have more kids? I just had echo's done because we still had no answers. I decided I would rather be out the money for the boys echos and have the peace of mind that I needed. How grateful I am that we were once again blessed. I finally feel that this offers some closer for us.
If you remember back to the days after the "Berlin Heart" you will remember that they thought Kaidence had a "Glycogen Storage Disease" because they found Glycogen in a piece of her heart. They told me that they could not waste a heart on Kaidence because if she did have this disease, she would wastes away and eventually die. It would be more ethical to give the heart to a child that would have a chance at a healthy, normal life. They then took her off the transplant list once again (I was devastated). They cut her thigh and took a piece of muscle from her leg and ran tests on it. The tests took days and I could not sleep. What was I going to do? How was I going to pull the plug on my healthy baby? The only thing keeping her alive at this point was a machine that was plugged into the wall. The test from her thigh came back showing that she did have glycogen in her muscle but not severely enough to keep her from getting a new heart. That was one of the best days ever. I remember my mom took me to "Hires" and I had a Coke, Big H and Onion rings. I hadn't eaten in days and finally felt like a weight had been lifted from me. I once again had hope. We now think that the Glycogen had presented itself in her heart and other muscles in her body because she was so sick. Her body was shutting down and unable to metabolize what it needed to, so it was just building up.
To see these results now and to think that Kaidence was taken off the list, possibly forever for a disease that she never had, makes my stomach sick. Once again, I have no doubt that the Lord does have his hands in everything.
Sorry, I know that how Kaidence got sick has made many very nervous and paranoid for their own families and I can't blame them. But you have to remeber that her illness was a rare thing. Life still has to go on. All we can do is be respectful to others when our own kids are sick and keep them away and hope that others will do the same.
So Kaidence did get the Cardiomyopathy from whatever stomach bug our family had. I cannot sit and play the "what if game" as to why she got sick. I cannot place the blame on anyone or anything. It won't make things better and I have no doubt in my mind that this is part of Kaidence's earthly mission. Too many lives have been touched for the good, including our own.
Posted by Kaidence's Mommy at 11:27 AM
Monday, December 15, 2008
I am proud to announce that........Kaidence has gained weight. On December 4th she weighed in at 20lbs 8oz. On Friday December 12th she weighed in at 23lbs 14oz. That's over 3 pounds in 9 days. Yeah!!!!!!!!! I started supplementing her feeds with Duocal. It is a healthy way to increase calories without using all of the cream cheeses and other stuff that I really don't want in Kaidence's arteries. The whole reason for our Cardiology visit on Friday was to get echo's for the boys. Because we don't have any reason for Kaidence's Cardiomyopathy other than the stomach virus we got, the doctors wanted to be sure that all looked well with the boys hearts. Let me tell you, I was so afraid that something was going to be wrong with one of the boys. I feel so blessed to say that all looks well with their hearts and we will recheck them both in 5 years. What a great Christmas gift to me.
Also before I forget the "Standard Examiner" came out today for a interview and will be doing a follow up article in the paper tomorrow morning if any are interested.
We also attended our ward Christmas party with our WHOLE family. The boys did the nativity and "C" was the only 'wiseman' that was laying on his stomach half the time. "M" was very reverent and made me proud. We also had a special visitor. Let me just say that Kaidence was NOT a fan of Santa (see picture above). I have never seen my girl so upset. I have also never heard her cry so loud (ok, still not very loud compared to most kids but loud for her). Seriously though, she handles getting IV'S placed better than she handled just seeing Santa. She didn't even make it to his lap, she just started screaming the moment I started walking toward him. It was after all her first "Santa" experience. The boys loved seeing Santa. They must think Santa is pretty amazing because their lists keep changing everyday.
Also, to whomever it was that left the Baby Jesus and the beautiful cradle on our door step we thank you. What a precious gift. The kids love looking at it and all had to take turns holding the baby Jesus before going to bed. The music on the CD that you sent with it was so fitting. Thank You for thinking of us. We have it carefully placed in our home as a reminder for the Season. It has brought a beautiful spirit into our home. Thank You. What an amazing and perfect gift. We will treasure it always.
Posted by Kaidence's Mommy at 5:01 PM
Wednesday, December 10, 2008
I thought that it was about time that I posted again. Life has been busy with .....well, just life. This picture makes me laugh. It is one that I hade from the Childrens Miracle Network. This laptop doesnt have any pictures loaded on it besides this one. Doesn't "M" looks so grumpy? The family is doing well. Mike is still in a brace and has been so anxious to get back to work. It was fun having him home while it lasted but I got NOTHING done but it was nice having him around. The boys are so excited for Santa to come. "C" keeps coming up with these weird imagination things that he wants for Christmas and when I tell him that maybe Santa's workshop doesn't have such a thing he reassures me that Santa is magic and can make anything. Let's hope!
Thanksgiving was wonderful being home. We stayed home because Kaidence was still on the extra meds from the rejection. It was nice to have a quiet and calm Thanksgiving. We have been so blessed and have so much to give thanks for. Kaidence of course ate nothing of the wonderful meal, but she sat next to us in her high chair. And then the next day I braved the crowds with my mom, sister and her husband. Some people take it much to serious, but they always guarantee you a good laugh. I must add how fun it was shopping for the kids this year. Last year I refused to buy Kaidence anything that she could not use at the moment while lying in her hospital bed. I was so afraid of having it around my house as a reminder if something did happen to her. And the boys, well lets just say I grew up with all sister and so the boy thing takes a little more imagination for me but I think I did a pretty good job this year. Oh how I love my cute kids. They keep me laughing.....however, sometimes I have a "mommy moment" and it takes me a day before I can laugh about it. I am so grateful for every moment that I have my kids. We never know when that moment could be the last.
Kaidence is into everything! She loves to wear my shoes around, eat her Lip Smacker chap stick and tear all of the Kitchen towels out of the drawer. She is all girl, you should see how proud she is when you put her chap stick on her lips. I need to get her some of those dress up shoes. She is also in the phase of taking off her diaper while "napping" and going potty (1&2) in her bed....yeah for me! I thought I was maybe going to get one child that did not find fascination with that. She had Cardiology last week and was given the ok to go off the extra "rejection meds" ....very exciting. She has ear infections currently but with a high pain tolerance seems to be doing ok. She loves the Alfredo pasta from Costco we discovered with thanks to Amy and we figure it should be fattening enough. She has lost weight and so we are once again having to count every drop that child consumes and count the calories. She is now getting 3-4 feeds consisting of Pediasure, milk and a packet of Duocal bringing a 10 oz feed to 325 calories. My thought is eating that much, who would be hungry?????
We have been given the ok by one doctor to go out and enjoy some of the festivities this year as long as the crowds aren't huge. I can take kaidence to the store or mall every now and then and possibly to sacrament meeting only. We would really love to at least get to sacrament meeting as a family and so I think we will try sitting in the "cry room" that our building has since it really isn't used as a "cry room." It was that or sit in the hall, but I think that the boys would not do well "listening" to sacrament meeting out in the hall and it does make it hard to feel the spirit. We will try this and see how it goes and hopefully we can keep her healthy while still living somewhat normal. If you do happen to see us out and about please stay away if you are not feeling well. The doctor said that it is the hands on contact with Kaidence that has the highest chance of spreading germs and making her sick. We love seeing and talking with you all. We may even go to our ward party this weekend. Kaidence has never seen Santa and maybe if we can make it to the front of the line she can sit on his lap before all of the other kids do. I remember how incomplete it felt last year taking the boys to the party without her.
How wonderful it has been this year to spend the Holidays at our house with ALL of our family. I love this time of year. I am so grateful to our donor family for what they gave to our family, Kaidence's "Angel Heart." I am amazed at how far that we have come and give thanks everyday to my Father in Heaven for the miracles, guidance and blessings that he has given to our family and I also give thanks to all of you for your part in our family's "Journey of Faith."
Posted by Kaidence's Mommy at 2:17 PM
Monday, November 24, 2008
Well I thought that it was about time that I update. Kaidence has been doing great. She is still on her extra immunosuppression for the rejection but almost done with the taper. She is a busy little girl and a very quick mover. Cardiology on Thursday went well and her echo looks great. She now says "owie" and "no-no". The steroids have helped increase her appetite but I am now finding as we are lowering the doses, that she is no longer wanting to eat as much ( NOT GOOD).
This picture is Kaidence sitting on the "time-out"bench. Notice her pink boots and fancy socks. My cousin gave her these boots and someone at the hospital made the socks for her. She LOVES her boots and always seems to be wearing them.
Today Mike had his surgery on his arm and everything went well. His doctor suggested that he get a nerve block for his arm. The doctor said this is the most painful surgery that he performs. Mike didn't want it but I was able to talk him into it. I said "they are drilling a hole in your bone, take the nerve block!" When Mike came out of surgery he said "poor sissy and all that she has had to go through." I would tell you all of the funny things that he was saying once the anatheseologist (SP????) gave him some good stuff but that would just be rude (but funny).
For the BYU game we went to my sisters house. Yes, I let Camden wear a Mohawk for the BYU game. I also told him to never ask again to wear one. I hoped it would make the Y a little more feisty, didn't work. All I have to say is the win or lose, it was much better than listening to the game from Kaidence's PICU hospital room last year.
Posted by Kaidence's Mommy at 4:18 PM
Friday, November 14, 2008
So those of you in our ward have seen that my children love walking along a brick wall at our ward building. They usually walk to the end and then jump to whoever is catching them (I have M's torn church pants to prove it.) Well, this seems like a ritual every Sunday for my kids and last Sunday was no exception. However, Mike was not ready to catch C when he decided to jump but was able to catch him anyhow. But.......he then felt a rip and curl in his arm. So needless to Mike ripped away his muscle and tendons. He will be having surgery in about one and a half weeks and out of commission just in time for shoveling season. This could however be good for me because I do need to get back into shape. Ya right, I just told him to go and buy a lot of "ice melt."
Also the verdict is in on Kaidence's "kitty box" disease.................NEGATIVE!!!!!!! I am so excited that she does not have this. Let this be a lesson that it never hurts to double check. I am so relieved. I was also finally able to talk with her cardiologist and she seems to think that Kaidence is still doing very well. The AMR rejection has not been studied much because it was never tested for until recently. However, they did say that we were lucky in a sense that the study and push for studying this form of rejection stems from right here in Utah. So they really don't know exactly what the finding truly means, is it more likely to reoccur? How it is treated? They don't llnow, but people are starting to look into it. Hopefully we can keep it under control until they find more answers. They have seen a strong connection between AMR and Coronary Artery Disease. So far Kaidence's coronaries look fine.
I found this from baby Mia's blog and am copying them (I hope you don't mind Mimi). I found this info interesting and hopeful in regards to Kaidence's future. I cannot believe how far medicine has come over the years. When you think about it, the advances are truly amazing and it gives me hope knowing that more is learned every day in the world of transplants.
1964 - First transplant: A chimpanzee heart beat in a human body for 70 minutes.
1967 - The first human to human transplant, the man died from pneumonia 18 days later.
1984 - First successful heart transplant in a toddler: Two year old Elizabeth Craze became the youngest surviving heart transplant patient. (That is only 24 yrs of history and data!)
1995 - the first successful INFANT transplant happened at Loma Linda University. Eddie was just 4 days old.
1995 - The first year they were performing heart transplants for small children at Seattle Childrens. (That is only 13 yrs ago!)
As of the end of 2007, Tony Huesman is the world's longest living heart transplant patient, having survived for 29 yrs with a transplanted heart.
22 years after transplant, Dwight Kroening is the first heart recipient to finish an ironman competition.
There was actually a period of time in the 70's when research in the field slowed due to continued rejection. The improved life expectancy of patients after heart transplant is largely due to immunosuppressive drugs, which reduce the body's tendency to reject the new organ.
There were 2,192 heart transplants performed in the US in 2006, and 2,125 in 2005. Each year, thousands more adults would benefit from a heart transplant if more donated hearts were available. In the US, 74% of heart transplant patients are male (whoa.); 68% are white; 20% are ages 35-49 and 55% are ages 50-64.Survival Rate:
As of June 2007, the one-year survival rate was 85% for females; the three year survival rate was about 76%, and the five-year survival rate was 67%. These numbers have already improved. That is what is so encouraging about these numbers. They are old numbers. There is not enough history to go on for say a 25 yr expectancy, because 25 yrs ago, they didn't have near the knowledge they do today. The data that is being used to determine the 5 yr expectancy is 5 yrs old. There is new data today, and this Field is continually learning. Currently over 95,000 men, women and children await life-saving organ transplant (heart, lung, pancreas, kidneys, liver and intestines). Every organ and tissue donor can save and enhance the lives of up to 50 people. Green is the official organ donation awareness color- Go green.
The actual transplant
1. Is the entire heart transplanted? The back walls of the left and right atria will stay in the recipients body. You could say that it isn't an entire (intact) heart that is received. So, the surgeon actually cuts away the front part of the heart, leaving the back. Pretty wild.
2. How do they stop the heart? By injecting a chemical solution into the heart.
3. How do they fuse the breastbone? With steel wire. (you can see them on x-rays and feel them through Kaidence's skin)
4. How do they start the newly implanted heart? Warm blood begins to flow through the heart (by aid of the heart lung machine) and the warmth of the blood should "wake up" the heart and stimulate it to start beating. If this does not occur, it may be necessary to start the heart using an electric shock (defibrillation) kaidence's heart started on it's own and when they took out her old heart it kept beating for awhile in the bucket they placed it in. Once the blood is flowing through the new heart normally and without any leaks, the heart-lung machine is disconnected and the chest incision is closed
5. Do they always close the chest after heart transplant. No. It is actually uncommon to close the chest in an infant, due to swelling and the need to leave room for expansion. In an adult they do close the chest. Kaidence, had extra room in her chest cavity due to the large nature of her native heart, and therefor avoided a followup surgery to close her chest.
Amazing isn't it. Think of what the next 10 years will bring for us!!!!
Also here is her video link again for those of you asking, just click on the link below:
Posted by Kaidence's Mommy at 3:34 PM
Wednesday, November 12, 2008
Kaidence continues to do great. I received a call from the hospital yesterday letting me know that a blood test that she had, tested positive for Toxoplasmosis. What in the world???? From that test they look at whether she is AGG or AGM. She tested positive for the AGM which means that she "currently" has this parasite active in her system. If this is truly the case, Kaidence should be severely ill right now. This parasite is rare in the US compared to other countries and it wouldn't affect anybody with a healthy immune system severely if at all. Symptoms for a healthy person are usually body aches, fever, sweating swollen lymph glands (possibly for months), If you even have symptoms. This parasite gets in the muscles and for an immunosuppressed person this has been known to infect the heart, liver, brain and eyes. It could put you in a comma, give brain damage, cause blindness, seizures etc. The cardiologist worries because we have now lowered her immune system (because of the rejection) so low that if she really does have this and it is active like the test says she should be very, very sick.
The other weird thing about this is that toxoplasmosis is what they call the "kitty litter box disease." Yep, this is the reason you should never change a litter box when pregnant. But WE DON'T HAVE CATS AND ARE NEVER AROUND THEM!!! It is from cats that eat a mouse/bird that is infected, then the parasite reproduces in the cats stomach and then you can guess the rest. It is only spread from their poop. So for you gardeners out there, they say to wear gloves because the parasite can live in your soil for over a year. One other way of getting this parasite is by eating raw or undercooked meats that had been previously infected and as you all know KAIDENCE'S REFUSES TO EAT ANYTHING unless it is vanilla Pediasure. Anyhow, this is frustrating and a dangerous thing for Kaidence to have with her immune system, if she really does have it. I am trying to keep upbeat but I can feel the weight from worry about the rejection and now this starting to weigh me down a little. I did not sleep well last night because I sat and tried to figure out where she would have picked this up from and how. We have been through a lot and MADE IT through a lot. I am taking her in tomorrow to be retested and I pray that this will be one less thing that we have to worry about. We try so hard to keep her healthy. Please keep her in your prayers. She once again has the doctors baffled.
I should also add that this CANNOT be transmitted human to human.
I am putting her video link on the right sidebar of the blog and will hopefully add her news stories and other article over there as well.....when I get to it.
Posted by Kaidence's Mommy at 1:08 PM
Sunday, November 9, 2008
This is the story that was on today's Chilrden's Miracle Network PGA tour. I have a 7 minute version that they did an amazing job with. I will put that on my blog when I get it. It is like this one, just not as detailed. However, I love this version as well. It makes me count my blessings.
The links below are to the same video, just different sites.
This can video can also be found on the CMN network (Children's Miracle Network) as well. Just do a detailed google search. Enjoy!!!
Also, Kaidence is doing great so far with the rejection medication. Someone must have forgotton to tell her that her heart is in rejection. Nothing slows her down, she is still into everything and hasn't missed a beat!
Posted by Kaidence's Mommy at 2:26 PM
Friday, November 7, 2008
So I am a little broken hearted to say that Kaidence is in rejection. In fact I think I am sick to my stomach a little. The hospital just called and seemed as surprised as we are to hear this news. The good news is that we will treat Kaidence on heavy steroids and meds at home and not the hospital. The bad news is that Kaidence will be defiantly off limits as we will now be very immunosuppressed once again. So we are back to no visitors while she is on all of these meds. I do have one small request for my boys sake. I do ask a favor that if everyone is healthy that you still involve my boys in things. I don't want them to feel the effects of Kaidence's condition with their social lives. I am not sure what to think and the thing that scares me most is that we had no symptoms. I worry that I will now forever be paranoid that we are in rejection and just not seeing the signs. However I must find a blessing in all things so here it goes: I feel blessed that Kaidence's body IS handling the rejection so well and not giving us any other problems and that we are in our HOME. Little kids can compensate very well.
So with that said I will try to explain the best I can how they determine rejection. They took 4 pieces of Kaidence's heart to biopsy. They test for different things but the main things they do is test at 1) a cellular level 2) a vascular level 3) they use an international number (I don't know much about this one). 4) look for AMR (antibody mediative reactions)
So on the first three they grade on a scale from 1-5. (1-2 = normal) (3-4=mild/moderate) (4-5=moderate/severe). Kaidence's results were 1)cellular =2. 2)vascular=3. 3)International=0.
The AMR test is either Positive or negative results. Last Biopsy at three months out Kaidence tested negative. Today she tested positive. This basically means according to how I was described, that Kaidence has these rejection antibodies against her heart in her muscle and blood stream.
WE are starting treatment tonight and like I said will have to stay away from everyone. I am sad but enjoyed the worry free time that we were blessed with while we could. This AMR is very treatable they say. It is just that we have to once again lower her immune system even more. The steroids are very hard on her body and make her cheeks chubby again and she will most likely not feel very well. It causes bad headaches, stomach problems and just makes her feel icky. Please pray for her to not feel awful. She is too little to have to feel this way. We still feel very blessed and continue to count our blessings during this little setback. Kaidence still looks great and clinically she is doing well also. WE may have to biopsy again soon. We will keep you posted.
Posted by Kaidence's Mommy at 8:18 PM
(Kaidence getting ready to leave the hospital after her Cath lab.....See Ya next year and hopefully no sooner)
Posted by Kaidence's Mommy at 4:41 PM
Sunday, November 2, 2008
Posted by Kaidence's Mommy at 12:50 PM
Saturday, October 4, 2008
I was just thinking of how blessed we have been this year. Last year on this Saturday Session of conference Kaidence was admitted back into the PICU with her heart function only at 3-5 %. Ahead of us layed a heartbreaking yet amazing journey that would change our lives forever. I had taken her back into the pediatricians office because she was not feeling well and they told me to drive straight to the hospital and to call 911 if anything happened. I did quickly stop by the house as it was on the way to the hospital so that I could pick up Mike and have him give her a blessing. I felt strongly that this was what she needed before getting to the hospital. I still remember my little baby girl sitting on the kitchen counter in her little car seat as Mike and our neighbor gave her a blessing. I had no idea that it would be that last time that she would be in her house for a very, very long time and that she would be coming home with a new heart. I remeber that as I was driving to the ER I was trying to listen to conference, I needed that peace and comfort. The only talk that I remember from that day was about giving service to to others. Maybe it was because our ward, neighbors family, friends and strangers had already been so great to us and my heart had been so tender to the love and compassion they had shown our family. This was basically the only talk I heard from the whole conference that October but it filled my heart with such love and peace. Kaidence quickly became severely ill within days and this was truly when it all started to unravel very quickly. Kaidence had beautiful blessings and we had complete faith in them but Heavenly Father knew that we would not grow and gain as much if we did not have to struggle and try our faith. The next 3 months were the hardest months of our lives and our faith has never been tested so much as it was then. Having faith in the blessings that Kaidence was given required us having the faith that a medical miracle would transpire. Many caring for Kaidence doubted that these miracles would likely take place but Mike and I had to keep looking forward and with time and patience we have seen MANY medical miracles since those blessings. Miracles that saved our daughters life, time and time again. Miracles that fill our hearts with graititude.
I am so grateful that I could listen to conference today in my house with my 3 healthy children and husband and for the miracles that have transpired, for all of you that helped carry our families burdens and who took it upon yourselves to pray for, fast for and care for our family and "Our little Kaidence." She truly has become a little bit of everyones life.
I try to keep positive and embrace life and truly feel that we have tried to make the best of our trials but I sometimes find myself worrying about the unknown of Kaidence's future. After today's talks I have decided that I need to take upon myself the same attitude that I had when Kaidence was so sick and in the hospital. If I did it then, I can definitely do it now. We will make the best of whatever comes our families way and like one of the talks in today's conference stated "Come what may... and love it!"
Posted by Kaidence's Mommy at 11:21 PM
Friday, September 26, 2008
Life has been busy but at least no longer passing us by. We are all over our colds for the most part. Camden and Kaidence still have a cough but most likely will for the winter. I took Kaidence into the doctors about 10 days ago and she had an ear infection and was given an antibiotic which in turn with the combination of the medication and the virus broke out in itchy hives. We have had them ever since and they will sometimes just flare up. Her G-tube site is also having a few issues and we have been working on that. She had a cardiology appointment on Thursday I am sad to say that after a week on antibiotics Kaidence still has an ear infection BUT she has gained weight.... finally. When I took her in for her ear infection the first time she weighed 21lbs 13oz. Thursday in cardiology she weighed 23lbs 5oz. I am so happy. The only bummer is that I have been getting ALL of her feeds through her G-tube and has not taken a sippy for over a week. We have also switched one of her immunosuppresion medications. Kaidence is no longer on Cyclosporin (the hairy medication) we are now on Prograf which has less side effects. We are happy about that and hope that we have good luck with the medication switch. We also have Kaidence's annual cath lab coming up(yuck). We are currently scheduled for December 26th. Not a fun way to spend Christmas break but if we did it earlier in December and they find that she is in rejection then back in the hospital we go and she will once again be on heavy immunosuppresion and on house arrest. I must say that I would love to have a Christmas with all my kiddos this Christmas morning at our house and not our other "house on the hill". Physical therapy is going well and Kaidence is making a lot of progress. She pulls herself up to everything and is starting to walk around furniture. She is not very steady on her feet but we are still so proud. Also today she discovered the stairs and seems to have a great interest in them even though she still doesn't want to crawl but who said she couldn't climb? I love to look at Kaidence every day and embrace the miracle that she is. Tonight I was helping the kids put out the Halloween decorations and Camden pulled out some decorations and said "hey mom, these use to be in sissy's hospital room." I must say I became very emotional as a flood of memories came back to me. I am so grateful for the life I had then and for the life I have now!
Posted by Kaidence's Mommy at 11:45 PM
Wednesday, September 17, 2008
Today my sweet little boy Camden turned 4 years old. All he wanted for his Birthday was a pink Bike. So we knew that getting a pink bike was not going to happen for him ... so he got a blue and yellow bike. Super Speedy if you ask me. Camden is such a sweet and loving little guy. He has a very tender heart. He is my little snuggle bug and I love him so very much. He is a wonderful helper and a very protective big brother for his sister and loves to try to mother his little cousin Ryan. Him and McCaden play very well together and are bestest buds, most of the time. Unfortunately he is sick on his birthday today (myself and Kaidence as well) from whatever we got this last weekend at the cabin but he is still as happy as can be because today is finally HIS Birthday. Happy Birthday buddy, we are so proud of you and thankful that Heavenly Father sent you to us!
I am having trouble posting his picture but will get back to it soon!
Posted by Kaidence's Mommy at 2:18 PM
Wednesday, September 10, 2008
Posted by Kaidence's Mommy at 3:52 PM
Friday, September 5, 2008
Let me start off by saying that I am so happy that we had our vents cleaned out. They were filthy and I needed no explaination as to why my house looked like it did after dusting. I can't believe that I had my whole family (all kids that have asthma) breathing that 50-60 years of yuck! Anyhow, the guy that came out to our house did an awesome job and I would highly recommend him, Soot and Cinders cleaning. He knew our situation with Kaidence and so he made sure that he got them as clean as possible. He had his mother come and help wipe down all of the hoses before bringing them into the house and she also scrubbed all of my vent covers amongst other things. They even cleaned up after themselves. I am so glad we did the negative pressure cleaning and not the $99 special. I couldn't believe all of the dust, dirt and grime.....a little embarrassing I must say. I just need to do a little in the laundry room and then I am all done with the cleaning and de-junking.
Kaidence spent the day at the neighbors while we had the ducts cleaned out. She is teething on her right side now that she has all of her bottom teeth (even molars) on the left side. I am hoping that is the cause of the fast poopies and the runny nose. She is eating better than ever (but stopped solids...teething) and seems much happier. She has started to throw her head back when she laughs and she thinks she is pretty darn funny.
Posted by Kaidence's Mommy at 8:35 PM
Thursday, September 4, 2008
I think that I am finally all done with my house, thanks to the girls that came over tonight. A huge thanks to Amy, Angie, Paula and Becky. Thanks for your help and most of all your company. Paula, your next!!!! Tomorrow the Duct cleaner man will be here to do the rest. I hope it works.
Kaidence looks so much better. She is eating, but has lost a lot of weight. Hopefully I can get the weight gain going because the doctors are starting to put on a lot of pressure, but when she keeps getting sick with the throwing up and the fast poopies that doesn't help much. We will keeping moving forward. I am starting hope that Kaidence's gross motor skills (walking or crawling) will kick in very soon. I hope that I can keep her healthy and happy.
Posted by Kaidence's Mommy at 9:16 PM
Monday, September 1, 2008
First let me start off by thanking all of you for your prayers and the comments that you leave. We have the greatest family and friends ever and we are always so grateful for all of your support.
Kaidence came home today. Every test they sent came back negative and they sent A LOT. So They figure that Kaidence either has a virus that they do not have a test for OR it all points to her Cellcept drug ( I think that it is the drug). We have been dealing with this vomiting and diarrhea issue since she came home and started full immunosuppression with that particular drug. I have seen the patterns for months and months and have tried getting them to try something different. Today they finally took Kaidence completely off the Cellcept and placed her on a different medication. We will wait and see what happens. The vomiting has stopped (I hope) and the fast poopies are getting better. Her appetite is not the greatest and so I will have some feeds to make up throughout the night. She looks much better and seems very happy. I couldn't help notice that within a few minutes of being home her nose started running pretty bad. So I basically walked in the door and stripped down Kaidence's room and washed all of the walls, floors everything. I hope it helps. She has an air purifier in her room so I am hoping that will help keep the dust down until Friday when the vents are cleaned. We will not be using the AC until then because I don't want to dirty what I have done, in fact the wood shutters that I wiped down on Saturday are already collecting some dust on them. So basically our plans are to keep Kaidence happy, up on feeds and get the house cleaned. She has a Cardiology appointment on Thursday and we should know the results of the 24 monitor that she wore. I am so happy to be home and so happy that I can be there to get my kiddos off to school as well. I just want to be a mommy. Anyhow, once again thank you for all of your love and well wishes and for still checking in on Our Little Kaidence.
Posted by Kaidence's Mommy at 9:00 PM
Sunday, August 31, 2008
So I will try to make this fast because I am not sure that my eyes will stay open. WE made it to our room at about 3AM and got to lay down at about 4AM. Why must the ER always take FOREVER? The funny thing is that pretty much everyone knows and has had Kaidence as a patient at some point or another. In fact, Cardiology had called into the ER and told them what needed to be done but I guess that they just wanted us to hang out with them a little longer. Anyhow, Kaidence has vomited off and on but this afternoon has really seemed to keep down what she drinks. She threw the biggest fit ever when we got to the room this morning. So, I was a litter flustered trying to quickly pack everything and forgot her sippy cup. I thought "no big deal" she wasn't eating anyhow and I would just have Mike bring it in the morning. With Kaidence's weak suck she will only take certain sippy cups and the hospital does not carry them . I had also realized that I left her G-Tube extension at home and that without it I had no way to give her meds or feed her. So of course, Kaidence decides she needs to eat NOW and I had no way to feed her. She kept signing milk and we finally had to give her a bottle with a different nipple on the end. Well, I was glad to see that she had some spunk in her and Mike did bring her cup up today, so all is well.
The Diarrhea is pretty bad and she seems to be starting to struggle with some respiratory issues. She is coughing more often today. They are testing everything possible and are starting to look into parasites. They came and wanted to know if we had been travelling out of the country. HA HA HA!!!!! Seriously, when would we find the time to do that? At least they are trying to figure it out and we appreciate that, but I still think some of this if not a great deal has to do with her meds. We will wait and see what happens tomorrow! Thanks and have a great night.
Posted by Kaidence's Mommy at 9:37 PM
Saturday, August 30, 2008
Well, let's just say that this week has been ummm......CRAZY! Despite all of my efforts to make my baby better she still continues to puke and poop. She is quickly loosing all of the weight that we worked so hard to gain and she is now refusing to eat a t all. She goes in and out of looking ok and then looking terrible. We are being readmitted to the hospital and currently sitting in the ER and Mike is home with the boys. Am I allowed to SCREAM!!!!! I feel stressed with everything in life at the moment and have been really trying hard to get our house cleaned up (currently it is a disaster..seriously). We have been trying to figure out why our house is so dusty and we are not talking your typical dust, it's pretty much black. AS Mike was adding a new vent (because for some reason we have a vent heating and cooling the garage) we learned that apparently all of the ducting has not been sealed and that may be the source. Also when we moved in I found that when the previous owners had the bathroom remodelled that they threw all of the tile grout down the heater duct. Anyhow we have been changing the vents every other week for about a half of a year and let's just say it is always filthy and thick. We are having the ducts and furnace, AC coil cleaned this week with the negative pressure cleaning system and were told that it would be best to have all walls and everything wiped down and cleaned so that when the furnace was cleaned it would not cycle through again. My mom and I spent the day tackling the kitchen and I still have a whole house ahead of me. Keep in mind it was already a mess because Kaidence has been sick for a week. So you can't even walk down the halls and I literally had NO clean clothes to pack for the hospital for myself or Kaidence. I called my sis on the way and she let me borrow some PJ's. However, when I got to the hospital My bag was soaking wet and sticky. I soon learned that my bran new bottle of hairspray didn't have a drop in it so my very few articles of clean clothing are clean no more. Thanks for letting me vent and sorry that it was such a long post. Although we know how blessed we are I think it is normal for us to get frusterated. Yes, this is frustrating. Yes, I hate Kaidence being readmitted. Yes, I hate having her look at me and not understand why I am letting all of these strangers hurt her. It breaks my heart every time. I just have to remember how far we have come and remember that it could always be worse. Thank You for your prayers. Please pray for my little boys that followed their mommy out to the car tonight begging her not to go back to the hospital. Have a Happy Holiday weekend and let's hope that they can figure out what keeps making her so sick! Thanks for all you do.
Posted by Kaidence's Mommy at 10:48 PM
Thursday, August 28, 2008
Ok, I only have a minute. Sorry that I have not updated but our Internet was not working. Kaidence came home from the hospital later Tuesday afternoon. Her liver labs started looking better and the vomiting had stopped (until we got in the car to come home). We think that it must be another virus. She is having some skipped beats with her heart and so we brought her home on a heart monitor for 24 hours. We should get the results back early next week, we are keeping our fingers crossed. They finally understand me when I say that her C-PAP mask is not working with her. The hospital tried on every mask that they have and could not find one that worked for Kaidence. The Pulmonary Doc is seeing if he can get "special permission to send her home on High flow Oxygen." Home health says they only send people home on it if they are having Hospice care, so we will see what happens. I think I hope it works out. She would tolerate it better than c-pap.
Kaidence is doing ok. She has the fast poopies but has stopped throwing up. Her appetite is not that great so I will be tube feeding tonight for sure. She had a check up today at her peds office and all looked well. Oh ya, she also ate her first crayon tonight. We were given a gift card to go out to eat and eat so she decided to bite off a piece of the red crayon and then throw it up in the restaurant in front of everyone. Good times!
Thank you for all of your prayers, we love you all!
P.S. I retract make earlier statement about no longer throwing up. It has started just up again as I am blogging this. I love cleaing up throw up and I am getting pretty darn good at it!!!!! Gotta go and clean up!
Posted by Kaidence's Mommy at 8:52 PM
Monday, August 25, 2008
Kaidence is making another over night trip to PCMC. She has been throwing up since Saturday and has had some different heart beats. She has also started to get a fever. I took her to clinic this morning and her lab results showed some concern with her Liver so we will be having some different test run and we will see what happens. Please keep her in your prayers, she has already been through so much, I hate to see her have to go through more. I will be at the hospital trying to read book two of "twilight" I have some catching up to do.
Also, today was a big day for McCaden. He started 1 st grade. I love ya bud!!!
Posted by Kaidence's Mommy at 2:34 PM
Thursday, August 21, 2008
Today has been a bitter sweet day. I wanted so badly for the "Berlin heart" to do for Christian what it did for Kaidence and I am so heart broken that it could not. I attended Christians funeral services today and they were beautiful. The family did a wonderful job of capturing who their son was and what he meant to so many. I continue to pray for his family and hope to spend some time with them soon. On the front of his program it read "Some people dream of angels, but I have held one in my arms."
I do hope that we can all take the time today to embrace those that we love and be kinder to those around us.
On a happy note, little Grace is getting her new heart today and we wish her family all of the luck we can. Today is the day of their new beginning. Good Luck Baby Grace, we are so happy for you!
WE have finished up all of the filming for the Children's Miracle Network and are very anxious to see the story they do on Kaidence. They have spent so much time and thought capturing our feeling and emotions of Kaidence's Journey. Kaidence is getting to be such a busy little girl. Her bottom is still her mode of transportation but I think she may be thinking about trying to crawl. She has become strong enough to get herself from the laying position to sitting, WAY TO GO!!! Her feeds and eating are improving and she doesn't throw up as much. She is starting to get more of her voice back although it is still pretty soft and she will sometimes just sit and jabber. The boys are getting ready to start school and hopefully this year we can all be together for the holidays. Thank You all for your support and love and for being part of our families "Journey of Faith, Hope and Trust."
I had another heart mommy give this to me and I think it is a great way to sum up our new lives as "heart mommy's". Our trials have not been what we expected and our lives are forver changed but It just reinforces that good can come from everything and that life and trials are all about your attitude, your perspective, your faith and your hopes!!!
WELCOME TO HOLLAND-By Emily Pearl Kingsley
"When you are going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans...The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say, "What do you mean Holland? I signed up for Italy! I'm suppose to be in Italy. All my life I've dreamed of going to Italy." But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you bring to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special , lovely things about Holland."
I hope that we can discover life's beauty and blessings as we take our own personal tours of Holland!
With Hope, Faith and Love,
Posted by Kaidence's Mommy at 1:13 PM
Tuesday, August 19, 2008
My heart is broken as I write to tell you that our little buddy Christian passed away on Saturday evening. Christian was Kaidence's "Berlin Heart buddy" as he was waiting for a heart transplant and Casie and Scott have become my friends as well. Casie, Scott and family, we are thinking of you. Christian is so lucky to have a mommy and daddy like you. I know that he loves you as dearly as you love him. Please pray for this sweet family as they live life day to day without their sweet little boy.
Posted by Kaidence's Mommy at 12:48 PM
Tuesday, August 12, 2008
Sorry it has been so long since my last post. We have been insanely busy the last two weeks. We went to the cabin 2 weeks ago and had a great, relaxing time ( I will post more later) and we are still de-junking our house. We have also been doing some stuff for the National Children's Miracle Network. This post will be quick because we have an appointment today to place the button to Kaidence's g-tube. We were originally going to put her under for it but I hate to have her intubated again for such a quick thing. Kaidence has been doing AWESOME and she looks great. I think that she just may skip the whole crawling ordeal and just start walking. Her last appointment on Thursday went well and we don't have to go back to Cardiology for a whole month. I have NEVER stayed away that long in over a year. We of course will be back for other appointments like another sleep study with her c-pap, but just to know that her heart is doing so well that they feel we can space things out a little more is wonderful. Every time I walk through the hospital doors I count my blessings when I get to leave that same day through them as well.
I never cease to be amazed as to the kindness that comes our families way. To whomever dropped off the two boxes at our home last evening, we sincerely Thank You. I was shocked and overwhelmed at what you left on our porch. It was exactly what we needed and at the timing was perfect. We are so grateful for it and we promise to pay it forward as soon as we can. We know that "where much is given, much is required" and our family has been given so much and we know that we have much that we need to do in return. We will forever be repaying all of the kindness that has been poured upon our little family.
Posted by Kaidence's Mommy at 11:37 AM
Sunday, July 27, 2008
Our sweet friends, the Brimleys lost their little angel Isaac last evening. Please keep them in your prayers. They are amazing parents that made the most out of the time they had with their little one. We love them and are saddened by the loss of Isaac. We love you Paul and Jessica!
Also today is Kaidence 's one year mark being diagnosed. In fact at this time last year we were waiting in our ER room in total shock. I have so many emotions and am so full of gratittude. However, given the loss of our friend, I will post more later.
Posted by Kaidence's Mommy at 9:59 PM
Friday, July 25, 2008
Just wanted to let you know of a fundraiser that is happening for one of our little friends. Daxton is currently waiting for his miracle to happen, a heart transplant. The cook family is from Bountiful as well. Some friends of theirs have set up a huge Yard Sale for tomorrow. They are hoping to earn money to put towards Daxton's medical bills. If you have anything that you would like to donate to the yard sale please have it at the Winegars parking lot in Bountiful tomorrow morning between 6:00-7:30 AM. If you would like to shop the sale you can do so from 8:00 am -2:00 PM tomorrow (Saturday). Also, a fund has been set up at the Mountain America Credit Union titled “Baby Daxton Heart Fund.” For more information about this or any of the other fund-raising events, please call 510-0117 or 688-3636. Thanks, we live in a wonderful community!
Posted by Kaidence's Mommy at 4:07 PM
Tuesday, July 22, 2008
So like I have said, the last few weeks have been a little bitter sweet to reminisce as to the fact that last year at the time we had 3 healthy children not knowing that things would change extremely. I often try to remember how easy and worry free life was then compared to our life now, even though I am so grateful for the life we do have. So this week on Sunday, July 27th will be our 1 year anniversary since our lives changed forever. I have so many mixed emotions. It seems so long ago since it all happened. In fact last year at this time we were on our family McCall, Id vacation where it all begin. We were all were SO SICK! I wanted to do something special to mark the anniversary and to celebrate how far we have come. Any fun ideas of how to celebrate (keep in mind it is Sunday)? If I was rich I would love to invite everyone over for a big picnic celebration and invite all our family, friends, ward family, nurses and doctors so that we could personally Thank You all. That of course won't be happening but do know that you all would have defiantly been invited and that we are so thankful for what you have done for us. We are so grateful for all that we have learned this last year and for how our lives have been touched for the better....forever!
Posted by Kaidence's Mommy at 1:58 PM
Monday, July 21, 2008
Posted by Kaidence's Mommy at 11:41 AM
Friday, July 18, 2008
First of all I want to thank those of you that prayed for Sarah and her family. She has been safely returned.
Well, we have had a crazy week. Kaidence had her "well child" check-up and is gaining weight and is getting back on track with everything else. She is eating better and seems pretty happy to me. Thursday was of course cardiology. Her echo looked great and the issue from the cath lab looks much better, in fact they are now saying it is only "trace-mild" so that is another blessing. All of her other numbers look great. So Thursday and Friday we had appointments with ENT to follow up on the sleep study that I was sure Kaidence passed with flying colors......well, she pretty much flunked it. I thought she had passed because she didn't even snore once that night. Kaidence has SEVERE Obstructive Sleep Apnea. If you have heard her snore you know what I am talking about. A little bummer for us but not a big deal in the big picture (we have be through much worse). Her tonsils and adenoids are small (we were hoping they were big and we could remove them and have everything fixed, but we all know that would be too easy). We have her back on oxygen at night until we can get her set up on CPAP (about 1 month). Apparently a child Kaidence's age should have less then 1 episode (stop breathing) an hour....well, Kaidence averaged 17...yep 17, obviously not good. The doctor says she has a very crowded mouth and hopefully as she grows more room will be made. She may or may not grow out of this. Oh, I hope she does, what a bummer to go to girls camp and have to sleep with CPAP. What a bummer to have to sleep with it period. Anyhow, we have a lot of follow up appointments scheduled and need another swallow study and a bunch of other stuff to get her on CPAP. Hopefully it will be sooner than later because the apnea can cause a lot of problems with her Pulmonary Pressure in her lungs/heart and overwork her heart as well.
Other than that not much else going on. Here's the link to the ABC 4 News story from last night. You can read the article or watch the news story on the right side of the page of this link. http://www.abc4.com/news/local/story.aspx?content_id=b937ad0c-02a9-4899-b72e-412653e340ff
Anybody watch the "Hopkins" hospital story? Yes,I cried.
I have a "catch up" post written to update all of the "this'n that". I just need to download my pics. Hopefully soon. Thank you as always for your concern, support, kind words and love.
Posted by Kaidence's Mommy at 4:01 PM
Wednesday, July 16, 2008
MY NAME IS SARAH
I RAN AWAY ON TUESDAY, JULY 15TH 2008. I WAS LAST SEEN IN THE AREA OF WEST TEMPLE AND 3600 SOUTH. MY FAMILY IS REALLY WORRIED ABOUT ME. I WAS WEARING A BLACK SHIRT AND GREY PANTS. I HAVE A KELOID ON MY CHEST. PLEASE CALL SALT LAKE COUNTY SHERIFF’S OFFICE AT: 743-7000 WITH ANY INFORMATION. Call Wendy – 801-381-7013
SARAH – PLEASE CALL 1-800-786-2929 – 1-800-RUNAWAY
Posted by Kaidence's Mommy at 10:37 PM
Tomorrow evening at 9:00om channel 4 is a new medical program called "Hopkins". It is a show that documents children and the families of those children during their journey while at the Hopkins hospital. Tomorrow evening will be a story about a young boy waiting for a heart transplant and his journey. We have been contacted and asked by Donor Services if we would do an interview on the 10:00 channel 4 evening news following the program in hopes of raising the awareness and the need for organ donation (this is for all of our heart buddies patiently waiting to get their new hearts). We agreed and it is our hope that if any of you are unsure about organ donation that you watch the "Hopkins" program tomorrow evening. We want to raise awareness and are trying to do whatever we can so that others like Kaidence can too have a second chance at life. We received our first letter this week from our donor family and are forever grateful to our sweet donor family and the dear little boy that has saved Kaidence's life. Thank You from all of our hearts, you are always in our prayers.
Posted by Kaidence's Mommy at 8:04 PM
Friday, July 11, 2008
Really quickly because I have got to get the kiddos to swimming lessons, I did want to let you all know that yes we are doing ok. I have had some phone calls and e mails checking on us because I am such a slacker. Thank You for your concern and for thinking of us. I still love having that feeling of knowing people actually still check up on us. We have just been super busy and yes we even got a little weekend retreat in last week. I have to get my house clean today before I can allow myself to plop myself down and blog (and it is not too clean). I also have a lot of pictures to post (yes, still). So yes we are all doing well and I have some fun updates coming up if I could just keep from drowning in my messy house. Hope to post tonight.
Posted by Kaidence's Mommy at 10:10 AM
Saturday, June 28, 2008
Yes, we did make it home today. I think the doctors are surprised at how well Kaidence is doing. First if all yesterday her daddy and brothers came to see her. I was standing with her outside her room when her brothers and daddy came walking down the hall. She was so excited to see them. Then when went to put her in the car today to go home the craziness came out in her and she was thrilled to be in her car seat. Her little legs were kicking faster than ever and the cute little noises she was trying to make just confirmed to me that yes, despite all that my little Kaidence has been put through she has a very happy, joyful and fulfilled life with her parents and her brothers just like the blessing Elder Zwick gave her back in October said she would. Kaidence is eating very well, in fact better than ever. She has had 24 oz of her Pediasure today so far, some tiny meat pieces and part of a vanilla waffer. Just the Pediasure itself is a record for her and a first. We will likely use her G-tube tonight for only one more feed at about midnight. It is great to be able to give all of her med through it as well so that she can have some positive feeding experiences instead of the negative. It is so hard to get her to take 16 syringes of medication a day. The fast poopies and vomiting have stopped. In fact she has not thrown up for a few days so she is finally over the virus. Her vocabulary now consists of " mommy, daddy, nanna, papa, RyRY (my niece Ryan). We are all happy to be home TOGETHER and I will go back up to the hospital tomorrow night for her sleep study. It is only one night, I can handle that. Thank you for your prayers, phone calls and comments.
Posted by Kaidence's Mommy at 9:42 PM
Friday, June 27, 2008
Sorry that I am posting so late tonight. Kaidence has had a great day today and is back to smiling and waving to all. We are planning on going home tomorrow (Saturday). I am so ready. McCaden called me last night sobbing and begging me to come home because he missed me, it breaks my heart. My boys have been through so much. They are such sweet boys and we are so proud of them. She took an 8 oz sippy cup today and she has not taken that amount all at once since she was diagnosed with her cardiomyopathy last year. Speaking of last year, next month on this day it will mark a year since our world was rocked and we begin our Journey of Faith. What a year it has been and how my heart has been touched and how my spirit has been changed.
Also, Our friends that we met this last fall in the PICU very unexpectedly lost their little baby boy yesterday, please remember them in your thoughts and prayers. Life is so very fragile.
Posted by Kaidence's Mommy at 9:58 PM
Thursday, June 26, 2008
Kaidence has a brand new tube. She did very well with the procedure. Her adenoids and tonsils look fine, so we will do a sleep study at another time to check for the apnea. It was great having only a one hour surgery verse 12 hours for a change. She is awake but a little grumpy. Ready for the ironic part? We come back to the room with lunch and she kept crying and reaching for Mikes food while signing EAT!!!!! Well that is how it goes! Thanks for the prayers!
Posted by Kaidence's Mommy at 2:58 PM
So it looks like I will get yet one more post out of my dying laptop. Kaidence had a pretty good night besides IV team coming in (again) in the middle of the night because her IV went bad. Anyhow, she threw up twice last night but the poopies seem to be a little better. She will be going in around 12:30 this afternoon for her G-tube to be placed. Hopefully we can get her to tolerate her feeds within the next couple of days so that we can get out of here. Thank You for all of your thoughts and prayers. We love you all and appreciate how you lift our spirits.
Posted by Kaidence's Mommy at 10:05 AM
Wednesday, June 25, 2008
Kaidence is looking better and better today. I can tell that she is so much happier. We have not vomited since 5 am this morning but still have the "fast poopies". We also had a positive stool culture. Kaidence has Adenovirus. It is common in children but really did a number on Kaidence. We think that the combination of the virus, high medication levels, dehydration and lack of calories all joined forces to make her really sick. We are all happy to have a diagnoses. We are possibly going to do the G-tube tomorrow or Friday. Also they want a sleep study because she snores very bad ( no really, its pretty bad). Other than that we are just giving her time to get better. I am also happy to announce that my tech that had her water break last evening while we were in x-ray had her baby boy early this morning at 5lbs. It seems that he is doing well. Also my lap top hard drive is fried and I may not be able to post as much, so don't be worried. My laptop may have seen it's last post.
Posted by Kaidence's Mommy at 6:38 PM
Tuesday, June 24, 2008
Just a brief update, The doctors have all been busy trying to figure out Kaidence. She is pretty well known around this place so it does make things a little easier because one way or the other people know Kaidence's story. This afternoon I had the boys a the hospital ALL DAY LONGGGGGGG! Our Mazda is broken and of course in the shop so we are down to the one car and Mike had a meeting at work that he did not feel he could miss. So I met all day long with doctors while Kaidence's hospital room looked ( and sounded) like some summer camp day care. Anyhow, we met with the ID (Infectious Disease) doctors, Cardiology (again) the Medical team and then the GI (Gastro Intestinal doctor). We have sent more test to the labs. I am still thinking medication is the major problem complicating things. We have given her bolus IV fluids and they have also started giving her calories into her blood stream. We are running her at a very slow rate with a little pediasure through her NG tube to help a little with the calories. Everyone that knows Kaidence and now sees her cannot believe how tiny she looks. It did not take her long at all to lose the weight and become so malnourished. We are hoping that the fluids will help pull her out of the vicious cycle of vomiting and weight loss. Sometimes when you become too malnourished the nausea increase and just keeps on going. We have pretty much decided that the G-tube will be best for Kaidence at this time. I just can't keep up any longer on the time and stress that it takes to try getting Kaidence to eat. Hopefully they will do that within the next few days or so. The procedure is VERY quick (only takes about 10 minutes) but will need an anaesthesiologist. This trip has been hard for the fact that Kaidence is very aware of who is who and what they will be doing to her and recognizes them by how they are dressed coming into the room. She has cried a lot more this time around. So crazy story. Tonight we took Kaidence down to have a chest x-ray and our cute little tech that went with us ran out of the x-ray room to find a bathroon. Well, her water broke during the x-ray and she is off to have her baby. So Lori, apparently Kaidence has a way with things. Come and visit, you may not need to be induced after all. I hope that all is well with her baby (it is 5 weeks early). I will post again tomorrow sometime. Thanks for all the prayers!!!
Posted by Kaidence's Mommy at 10:40 PM
We have once again been admitted to "our house on the hill". Cardiology admitted Kaidence this afternoon after her Cardiology appt. We are trying to get to the bottom of what is making her so sick. I think it has a lot to do with her medication levels. She is still vomiting and very lethargic. They did an echo, EKG and some blood work. So far nothing with the heart looks suspicious (still keeping our fingers crossed). We will also most likely do her G-tube procedure before leaving (whenever that will be) while we are here already but they have to get her stronger first. We will just wait and see what happens. I had a feeling that we would be here this week. You think I would have showered before coming or at least pack a bag. NOPE, that would jinx me! We will keep you posted.
Posted by Kaidence's Mommy at 1:26 PM
Monday, June 23, 2008
We have had a very busy week. Kaidence has been sick again and has really started to worry Mike and I. She has been throwing up and not eating since last Wednesday. Her Immunosuppression levels are too high as well. She just is not herself at all and seems so sad. The doctors are not sure what is wrong. I called today and asked that her Thursday appt be moved to tomorrow. I am worried about rejection but most likely because I am just a worrier. Anyhow, they have also decided that Kaidence will need to have a g-tube placed because she has continued losing weight ( I think she is down about 3 lbs from her heaviest weight at home). The feeding tube in the nose has started to aggravate her and has kept her eating anything by mouth. She won't even take milk or any liquid. She has had the tube for just about a year and they think that the tube has caused her too many oral aversions (exactly what I have been worried about all along). We will see tomorrow when they will take her in for that procedure. I have told them to do whatever they need to do so that I can have Kaidence healthy and happy again. She looks too skinny. They also cut down the dose of another medication that was just recently added back to her medication schedule. I am hoping that will help. She seems to do better on less immunosuppression. Your prayers would once again be greatly appreciated. I will update tomorrow.
Posted by Kaidence's Mommy at 9:16 PM
Wednesday, June 18, 2008
OK, so we are losing weight instead of gaining. I took Kaidence in today for some blood work. I weighed her and she has lost weight. What???? I should have mentioned in my last post that she has been on Pediasure for about 4 months. I have been trying a new product that my doctor gave to me called Duocal. It adds even more calories to her food and you can add it to anything, even bake with it. That would be great if we could get her to eat. She aspirated the other night and then threw it up. She has also started throwing up today and she looks not so great and now I don't smell so great. We will wait and see what happens. Hopefully, she can hold down her meds and we can keep her home.
I was tagged by my cousin...so here it goes:
1. My Husband
2. My Kids
1. Something serious happening to someone in my family (again)
2. Natural Disaster
3. My kids growing up to be naughty ( they are GREAT kids, I just wouldn't be me if I did not worry about EVERYTHING)
1. Keep my sanity from day to day as I raise my 3 beautiful, energetic children
2. Enjoy and savor the little things in life with my kiddos and hubby
3. Spiritually feed my children, my marriage and myself
1. Kaidence's Lab results/ medication schedule
2. My collection of dust
3. Chocolate and Pepsi (working on it)
Random Facts About Myself
1. I cannot shower at a hotel EVER without flip flops ( doesn't matter how nice)
2. I have never had a ticket or a broken bone (I am just asking for it.....I knocked on wood, Don't worry)
3. I have super long toes (now you'll all be looking)
Now I tag
ANGIE, PAULA AND LORI
Posted by Kaidence's Mommy at 2:36 PM
Friday, June 13, 2008
OK....I am back to blogging....I think! Well, I was once again waiting to post pictures of everything and still will, eventually. Parker is doing well and making improvements daily. He as well as 3 other PICU buddies had a rough day on thursday. Please remember these little ones and their families and doctors in your prayers. They desperately need it this week.
We had cardiology and all still looks well, except Kaidence's weight gain. She has lost some weight as we have been trialing her off of the feeding tube ( that has been wonderful to be without). She is 19lbs13oz (10th percentile). She has always been on the smaller side even before she got sick. We have a month to get her to eat and gain weight or else....the tube makes a comeback. I have need to get 1000 calories/day in a child that won't eat (still figuring that one out). I of course could do this in one meal but they don't seem to worried about me gaining enough. We are boosting her already boosted food but we need her to start taking more of it. Also, we got rid of all her oxygen ....yeah!!!!!!
I also have been trying to de-junk. I don't know how it happened (well I really know...it's called kids) but we have tooooooo much junk and they have too many weird toys. I cleaned out the boys closet and do you really think that I need an MC Hammer TAPE still, I mean seriously? I had a good laugh. Also a few weeks ago my sis helped me clean out my closet. Well, lets just say that I took a step back into Junior High. I don't know what I was thinking but I think I might have an illness and just can't let clothes go and I take whatever someone hands down. I haven't even worn 3/4 of them in years. Maybe it is because I know that I won't buy clothes for myself because it is more important to eat and have a house and sometimes you just have to prioritize and new clothes just isn't at the top of my list. Anyhow, I took 5 BIG black garbage sacks to the DI and yes, all from my tiny closet. I do have a sickness. Angie, you have a shoe problem, I have an outdated clothes problem. So I am getting some much need de-junking done so that my house can continue to hold our family.
We have been busy doing some fun family things that I will blog about with the pictures so that I can catch everyone up (this is after all pretty much my journal). I just wanted to quickly post and say, YES we are still here and all is well. I promise to get those pics up soon....maybe sooner than you think ( I hope)!
Posted by Kaidence's Mommy at 11:15 PM
Tuesday, June 10, 2008
It's about 2 am and I just got home from the hospital. It was great to visit with his family. Parker is still in surgery and the heart should be there about now. Last I heard is was doing great and they were just waiting. His mommy will call when he is done and I will post more after I wake up......goodnight. PS.....I found his care page interesting. If you read back maybe a week or so his mom talked about a blessing that Parker was given by his Grandpa. The post from that day talks about how her dad said that June 10th kept coming into his mind throughout the blessing. She went on to say they were all anxiously waiting to see what June 10th brought them. What's today's date??????? The Lord DOES have a plan.
Posted by Kaidence's Mommy at 1:47 AM