DONE!!!

DONE!!!!!! Two of the docs came out and gave report. Kaidence did great. We are still waiting to see her. GI's report was that she she does have irritation. They won't know the severity until we do the 24 hour study. The nasal tube was placed for that in the OR. It has a thing attached and I have to push different buttons every time she sits up, lays down, eats, stops eating etc. I may have a busy night! They will have biopsy results on Friday. Everything else with her stomach and intestine look good.

ENT Report- It turns out that the right vocal chord that we had always assumed to be the problem is not as bad as the left vocal chord. Kaidence's left vocal chord is paralyzed. This took place during her heart transplant. There is a nerve that goes around the heart and wraps around the Aorta. During transplant it was cut or damaged. Therefore, the vocal chord was paralyzed. He injected some plumping stuff into the vocal chord in hopes that it will bulk it up and give her voice some volume. It will also make her cough stronger to help protect her airway. This plumping stuff will wear off over time. If it works...we will do another procedure and thread a new nerve into the left vocal chord that is paralyzed. The right vocal chord has had some damage too it as well, but still is working....not perfectly, but working. He also took the extra tissue away from the left side of the airway.

Plan is to watch her for the next 24 hours. She will need some breathing treatments to help with the airway swelling. I am so glad they are not sending us home tonight. I would be a mess with worry. Mike just went back to see her. Here are some pics from earlier today. Thanks for your prayers. I will try to blog later but I may have my hands full.

Update #1- Halfway through surgery

Just got an update. They have taken biopsy pieces of her esophagus. They are placing the ph probe. They have looked at her vocal chords and will be injecting them with some plumping stuff. This may help her voice, but will not fix it. If this works, a surgery may be possible in the future to permanently fix the problem. They still need to cut away the extra tissue in her airway. So far things are going well (knocking on wood). Her vitals are great and she seems to be doing well. Keep the prayers coming. Thank You all!

Ready Get Set and GO........

UPDATE: Kaidence just went into surgery ( in her wagon). It will take about 3 hours. Please keep her and the doctors in your prayers......

Kaidence is so excited to be here today. She is spoiled rotten here and she knows it. All the hugs and kisses. She has her Mermaid nightgown ready for when she is all done with surgery. Also, I have nail polish for those little piggies of hers tonight. Might as well make it a 'girls night'. She will be staying the night. She is ready to get this done and she is starving. I already have a list of foods she wants to order after the surgery. Not sure she will feel like eating. We are forgoing the anxiety meds since they make her grumpy after surgery. She usually will walk herself to the OR without needing it. Her only request this time is a wagon ride. She already spotted one in the hall.

She was able to make a quick stop to the CICU to visit our friend Abby. I swear, those two girls look alike enough to be sisters. Abby is waiting for a new heart. Her blog link is on the right side of the blog under 'buddies at heart'. Her mom Michelle is amazing and I am so grateful that we were able to contact each other. It's been a blessing for me. Please pray for Kaidence friend Abby and her family.

Thanks for the prayers and fasting for Kaidence. I cannot imagine doing this without them. I will update when I hear anything!

Fast for Kaidence - Surgery Tuesday

(why is blogger messing with my photos tonight? SORRY. Anyhow, Kaidence in her Mermaid nightgown with the crown she was given in cardiology. Just ignore the oxygen that is not doing her any good at the moment. Also, a pic of k at a hotel with her "Mermaid Baby")

I was hoping for a longer post but I only have a couple minutes. I just wanted to get this on her blog in time for the weekend.

As you may or may not know, Kaidence is having surgery Tuesday. It's in part the surgery on her vocal chords from last time but also to look further into what they found last time they scoped her. They will see what they can do with her vocal chords. Also, they will trim away the floppy tissue in her airway. This tissue is making it so they can't even see her vocal chords when scoped. Therefore, when they get in there and remove the tissue and that's when the decision will be made as to treatment for the chords. This floppy tissue could be the cause for her trouble eating, swallowing food, choking easily and her obstructive sleep apnea at night. How awesome would that be to get rid if all those issues?

Next up, this part is bothering me a little. Kaidence has no symptoms of acid reflux but because the findings a year ago we started her on Prevacid. Her esophagus was red and swollen. Well, after a year on her reflux meds it still looks just as bad. In fact, its pretty darn bad. We are not sure why. It could be something not great and we won't even discuss that yet. Or, it may be very treatable. We shall find out. They will biopsy pieces of her esophagus and send it to pathology, just to be safe. She will come home with a ph probe down her nose for 24 hours and then we will go back for it to be removed.

We should be able to go home later that day. We have been told that she may not have a voice for 3 weeks. But hey, Ariel was without a voice for awhile. Also, she may be pretty run down. One issue could be airway swelling. This scares me a bit!

It seems to get harder and harder to hand Miss K over for surgery. Before, it was life or death. Now she is so healthy and happy. However, this needs to be done for her own safety. I am scared but Kaidence is not. In fact, tonight she is counting down the nights until she gets to go back to her "hospital bedroom". She is counting on her Little Mermaid voice.....Oh, how I hope she gets it!

Once again we come back to all of you to ask your help. Our family is holding a special fast. We are asking that if any of you will be fasting on Sunday to please remember Kaidence, the surgeons and doctors in your fast. For those that will not be fasting, please pray for them. I have complete faith in the power of prayer. Your prayers are heard! Her surgery will take place sometime on Tuesday.

Kaidence is a strong little girl and I wish I had her strength. Thank you for all the prayers and fasting over the years. They have carried us when nothing else could.

I will update again Tuesday!

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!