HOME..just busy!

Holy Cow!!!!! I have not had a minute to post. We have been discharged. They have K on some stronger antibiotics for a bacterial infection in her lungs. This bacteria may have been festering for awhile and they seem to think that is what may have been causing problems (migraines, cough, vomiting, fevers) for the last couple of months. Its not a common bacteria to see, so it was likely missed/passed off for pneumonia. Therefore, with ALL the antibiotics she has been and nothing has touched it and she has never gotten better.

So far, she has done very well since being on the new antibiotic. Now her heart rate and O2 at night is better than it has been in a long time. No more naps and all she wants to do is run and play. She spent the day in her swimming suit, although no swimming took place. Also her appetite is making a comeback. It has taken a hit lately.

I am so grateful that our stay was short and simple. Grateful that it was NOT what was originally diagnosed from the doctor who read her chest xrays (we will not be going back). We feel so humbled and blessed. All it takes is a few seconds for your world to take on a drastic change for the good or the bad. Needless to say, after what we were told on Wednesday......We feel blessed! Thank you for your love and prayers. We have some friends up at the hospital that could really use your prayers. Their names are Carter and Megan, they would be grateful for your faith and prayers....

From One Hotel to "The Other"

Finally, my baby girl is sleeping. Kaidence has been sick for about 1 1/2 weeks. It would almost seem off and on with a constant cough. She has been napping everyday and that is so NOT Kaidence. She also has been getting some pretty severe headaches since her rejection last August. They come on so sudden and cause her to vomit. They really do a number on her.


The last couple of days her cough has gotten worse. She has slept non stop and been super grumpy. I can't recall a time that she has slept like this (without drugs inducing it). She has also been super grumpy and that is not a Kaidence thing. With the cough, she has had a hard time moving the junk up and out. She has had a couple of blues spells from this. Her heart rate has been a HUGE concern for me. 152-154 SLEEPING! That is NOT a good thing and could be a sign of that darn R word.

I have been in touch with cardiology over the last week and she has also seen her pediatrician twice. It was yesterdays appt that got the ball rolling. Kaidence looked much worse than she had the two days before. Also, she had a chest xray done at the hospital by our house. It revealed a possible pneumonia in the upper right lobe. The main concern was the fluid in her lungs most likely caused from her heart. This is where I freaked out a little...or a lot! I think I cried the whole way to the hospital. The thought of her heart being in rejection again, just broke mine.

We were admitted by cardiology so we didn't have to spend hours going through the ER. Her echo for the most part looks good. Her valve is pretty leaky and that may be contributing to the fluid in her lungs. Her xray from here showed that stuff had cleared from her lungs from the xray earlier but she still had fluid in them (if the makes any sense?) They think that she may have had a mucous plug blocking her lung and trapping the junk in and then when that plug dislodged her lungs cleared a bit. If the fluid continues, we will start her on some lasiks.

MORNING UPDATE:
Kaidence had a good night and looked a little too good to be a sick kid at the hospital. We all know better than to think she is as good as she looks. This morning she looks pretty tired. Her coloring isn't as good as last night, she is coughing more and she does not want to eat. Also, the urine output is not so great. Last night she wanted to go walk around the hospital pushing her IV pole (ya, makes her feel cool. Like she is a big kid.) Today she walked to the potty in her room and needed to go lay down. Respiratory Therapy has started doing some treatments on her every 3 hours. So far, we are waiting on labs prograf and CBC.
It does not look like pneumonia at this moment but possibly some sort of bacterial infection that needs to be treated with a different antibiotic than those used to treat her last pneumonia and sinus infection. Kaidence does have a surgery scheduled for the end of the month to do some work on her vocal chords and her airway. Hoping that things will improve so that we can get that taken care of.

I will keep you posted. Thank You for your thoughts and prayers!

Happy 4th Birthday Kaidence (& an update)

(Kaidence at Hopekids Princess Party last spring. Of course she had to wear her crown)

Happy 4th Birthday to my Miss Kaidence! I cannot believe you are 4 years old. I think back to that beautiful snowy morning that you were born. It was so peaceful and still. It was so quiet outside that you could here the snowflakes fall. It has always stood out in my mind. Now I can joke that it was the calm before the storm. I am grateful that I was given the calm that morning. It almost like your Heavenly Father was bringing you down himself to me. It was beautiful as were you. You had VERY DARK long curly hair. So pretty. Now your hair is long and blond. When you got sick your curls went away but they are starting to come back. Maybe that's why you have so many snarls in your hair.

Looking back to when you were sick I never looked this far ahead. It was minute by minute. Of course I had hopes and dreams for you but I was too scared to dwell on them. I needed to protect my heart. We celebrated your month birthdays knowing that you may likely never see your 1st Birthday. Your Angel Heart came to you and here you are today. How blessed we have been to know such wonderful people. The gift they gave, they gave to all who know you. We love them with all that we are.

You are getting to be such a big girl. Okay, not weight wise. You weigh about 32 lbs. You keep your pink doctor kit, hospital badge they gave you and your purse with princess cell phone packed by your bed. You told me it was there for when you grow up and that you want to be a doctor and help sick kids. You then asked if I thought it was a good idea...of course I do. You'd be a GREAT doctor. You love riding your bike, in fact you are getting a new princess bike for your Birthday tonight. You will be SO excited. You love going to the cabin. Yesterday you packed your suitcase for the cabin trip in JULY! You make me laugh. This September we will try Preschool again. You were so sad when your heart got sick last year and you couldn't go to Preschool but I have loved having to myself a little bit longer. This summer you became a big sister. You love your little brother and take such great care of him. He has been a blessing to all of us! This Fall you get to go to DisneyWorld! It was a gift for your dads graduation from Nana and Papa and you cant wait (neither can I.)

Your persistence and love for life Carry me along. This summer when you got sick, I was worried you wouldn't make it to Birthday #4. It re-instilled many things in my heart. Mommy's are supposed to be the teachers in life and the kids the ones learning the lessons. For me it has been the other way around. You have been my greatest teacher and I have learned lessons that I am afraid could not be taught any other way. Kaidence, I love you with all my heart.

Happy Birthday Sweet Girl!

***UPDATE*****

Ok, So I am terrible at blogging. Same old stuff around here. Christmas was wonderful and we have all been healthy through the winter until February. From then on, its been a joke. Carden has had RSV and that has been a stinker to get over...he's still not over it. Kaidence has been sick off and on. More on than off this month. Therefore we have funky drug levels in her blood that make her get terrible headaches and a sick tummy. As of now, she sounds awful. She was up last night with a fever and cough. However, she was so excited for her Birthday. She woke up around 10 and her door was already decorated for the big day. We watched Strawberry Shortcake until really late and her fever broke. She has so much energy this morning...me not so much. She cannot wait for her party tonight. I can tell that she is still not feeling great. Ok, its really not a party because everyone is sick. She never gets much of a party this time of year SO we decided to do one for her this summer. A half birthday party. Summers just a better time to party for an immunosuppressed kiddo. She deserves a real party too.

Mike walked for graduation 2 weeks ago and that was great. McCaden took 2nd place at the Pinewood Derby (We were literally blow drying his car just before walking out the door). We were shocked by the win to say the least. The other day McCaden was watching the news and was totally disgusted when he heard that two "serial robbers" had robbed a place. He turned to me and said "that is just so stupid. Why would two people rob someone and still a bunch of 'cereal?' Ha, Ha, I couldn't stop laughing. Carden is slowly growing. He is 13lbs and eats like a little piggie. Not sure where all that food goes. He loves his Jumperoo. Camden is still girl crazy. How he loves the ladies. He is excited to try his hand at Baseball this year. He is also a smart little stinker at school.

I think that wraps it up for us. Thanks for checking in!

Our Gift of a Miracle, 3 years later!

My Dearest Kaidence,

3 years ago you were sick in a way that mommy and daddy could not kiss and make better. No band aids or medicine could fix your heart. Mommy and daddy tried so hard. As much as we wanted 'your' heart to get better, it just wasn't part of Heavenly Fathers plan for you. Your spirit was strong, patient and graceful as you waited, but your body was tired. I am sure you already understand much more of this than I realize. I have no doubt that in some areas, you are wise beyond your years.
Today marks 3 years from when you were given a second chance to be a little girl. You were given this gift by an amazing family who's hearts had been broken. They did not know you, but they wanted to save the life of another. Sweet girl, they saved your life. I cannot think of a more Christ like act than that. It truly is a miracle that people are so willing to do such a selfless thing. I still cannot talk about it without crying.

Kaidence, your life has a great purpose. Many have prayed for you and I have NO doubt that those prayers were heard. Prayers are not always answered in the way we think they should be, but they will be answered in the Lords way.

My sweet little girl. You are so brave. I know you realize that you have to do hard things. Things that most other little girls, your cousins, friends and your brothers don't have to do. You don't cry about it, you just do it and make the best out of it. You seem to understand that it just part of your life and you do it with grace. You not only amaze your mommy, but those that care for you. Just know that you don't always have to be brave, its ok. I will love you no matter what. I still get scared.

Kaidence, may you always live your life with the spunk and happiness that you do now. May you strive to make the most out of the miracle that you have been blessed with. I hope that joy, faith and gratitude will always fill your heart.

I am proud to be your mommy!

Love You Forever,
Mommy

Update and Wishing you a Happy Thanksgiving!!!

The weather is freezing outside and a big winter storm should be rolling in any minute now. Is my yard ready, are the leaves raked, is the tramp down and the playhouse boarded up???? That would be a BIG FAT NOOOOO! Oh well, at least our Christmas is all up and the shopping pretty much all done! I am just going to cozy down for the day.

Things around here are going well. The boys are doing well in school and their teachers had great things to say about them. We have started a new job system that seems to be working so well, we are on week 4 of success. Its amazing how much more time I have when they do their part in the family. It may not be done to perfection, but its not about that. Kaidence is doing awesome at her job of making her bed and picking up her room.

Kaidence is doing great. She loves being back in primary. Her part for the primary program was "Jesus organized the church." Also, she is giving a talk in primary tomorrow (guess I should be working on that and not the blog). Her next cardiology appointment is the first week of December. This week she is having another lovely sleep study. We are hoping that having the vocal chords healed will help with her sleep apnea problems. We are keeping our fingers crossed that she does well and then we could get rid of the O2 concentrator, air compressor and vent heater. Yeah!!!!! I am sure that will have some affect on our power bill. Next month on the 23rd will be Kaidence's 3 year heart birthday. Wow! We have been incredibly blessed over the years.

Carden has not been the happiest camper the last 2 weeks. Such a gassy tummy. That kid is ready for scout camp, he would be a hit with the boys. I have pulled every possible thing out of my diet to try to make this kid happy. Turns out that I think he is starving. He doesn't cry after I get done feeding him, but he just doesn't seem content long. So I am starting to have to supplement with some formula. This will be good because he is no longer on the growth charts. He is weighing in at 7lbs 5 oz at 8 weeks old. So he has gained about 2 lbs since coming home. Hopefully this will help fatten him up. Since supplementing, he is SO much happier. Hopefully this will be a step in the right direction.

On the 14th of November, Carden DeMont was given a name and a blessing by Mike. The name DeMont comes from my grandpa. He is a man of integrity and great faith. My grandpa stood in the circle during the blessing on what happened to be his 94th Birthday. I am so grateful for the many things that my grandpa taught me in life. His incredible Faith and trust in our Father in Heaven stand out the most to me. This example has blessed me in my life and in dealing with my trials.

We hope that everyone has a wonderful Thanksgiving. Be grateful for the many little things in life. We are thankful for many of you for the countless hours of service that you have given and for the many prayers that you have given for our little Kaidence. This journey would be totally different without you. We are grateful to our Father in Heaven who knows each one of us. He has carried me in days that I felt I could no longer keep going. He knows my needs, He knows my heartache and He knows my joy. He has a plan for each of us. Sometimes the plan is hard to understand and heartbreaking to watch and endure. However, we each have our own journey and He will provide a way for us to accomplish that journey.

Our hearts are full of gratitude for the family that gave to us, so that our kaidence could continue her journey on this earth. Not a single day goes by that my heart does not break for you, but at the same time my heart is so full of gratitude. I am amazed by what yo have given to us. We are so thankful that you are a part of our lives. You are such an incredible part of Kaidence's journey. Because of you her journey continues. We love you and pray that peace may be given to you always, especially in the coming weeks.

Annual Heart Cath Results October 2010

Yesterday went well with Kaidence's heart cath. The cath lab was running a couple of hours behind because of some sick kiddos. We totally understood because I know for a fact that we have bumped others a time or two as well. Just grateful that we weren't the ones needing to be 'fit in'. That's never a good sign. Kaidence did fine with it and only asked for something to drink twice. When it did come time for her cath she knew exactly what she wanted and how she wanted it. She literally danced her way into the cath lab. She danced and did princess twirls until she was standing next to the surgical table. She then asked someone to lift her onto it. She had already told the anesthesiologist that she wanted an IV in her foot, a root beer flavored mask (for the sleepy gas) and that she wanted "bear bear" to have a mask as well. She then proceeded to ask for a PINK oxygen mask, she had to settle for a yellow one. Thankfully she used her big girl manners when requesting it all. She was very polite. Once she was sitting on the table the anesthesiologist handed her the root bear flavored O2 mask. She said "hold on, I need to lay down first". Once she layed herself down, she took the mask and held it to her face until she was to loopy to do so on her own.

Recovery went well and she ate like a horse after. Seriously.......she ate and ate!

Her results came back today. Her pressures are looking a little better. Her AMR is still 'suspicious' but the other areas came back with pretty good grades. We are also waiting for the results of her specific antibody test, those should be back next week. Although we are not where we were before the rejection episode in August, Dr. E seems pleased with the direction we are going. The truth is that things may never get back to how her heart was. However, rejection is something that we want to completely resolve. Its just taking a little more time. With Dr. E feeling that Kaidence is progressing we will discontinue the IVIG (YEAH!!!!!!!!). I am not a big fan of IVIG and the whole process, but glad we have it just in case. Hoping that we NEVER need it again. No IVIG means that tonight she was able to get her flu shot (so happy). We will continue her steroids for one more month and hopefully decrease her prograf range to where it was before she became sick in August. Also we were able to stop her Lasiks (water pill). This means no more accidents while standing in front of the potty. Poor girl would get so upset when she couldn't make it fast enough. That basically sums up the day.

I am grateful that we are making progress, even if its slow. Its such a blessing to be heading in the 'right' direction. Thank you for all the many prayers.

Also, Carden gave me a wonderful birthday gift.......sleeping through the night for the last 3 nights. I must add that I am VERY grateful for that as well.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.

Cath Time Again

Well, its that time of year again. Tomorrow Kaidence will have another heart cath. They will be checking the pressures in her heart and also taking some biopsy pieces to check for rejection. She is excited to go, crazy girl. I wish her mommy and daddy were that excited. I was feeling really confident about her progress until a couple of days ago. Hopefully it is nothing more than nerves getting the best of me. Just very worried this go around as to what they will find and her pressures. This stuff never gets easier.

I will post about our latest doings when I have some time. I just wanted to let everyone know about tomorrow. If you are willing, we would appreciate the prayers for Kaidence and her docs tomorrow. I will post when we know results.