ROUGH NIGHT.

Today has been rough. Much rougher than any of us expected. How does a kiddo go to the opposite extreme so quickly? Honestly, it terrifies me.

The attempts for the PICC line in her arm failed. She came back to the CICU intubated. She has been miserable and has fought the breathing tube all night. That breaks my heart watching her coughing, crying and not being able to hear her. Tonight they placed a line in her groin and planned to extubate after. However, as I waited outside her room her heart rate and blood pressure severely dropped. As I could hear them rushing around for emergency medications I was told that Kaidence was seriously ill and that I should go and be by her bedside. Mike was on his way to the hospital after grabbing our stuff from the cabin. I buried my face into Kaidence and once again found myself pleading with Heavenly Father to let me keep my baby girl. I know that ECMO was briefly discussed. Kaidence's HR and BP have are looking better at this moment.

The biopsy came back and unfortunately Kaidence's rejection is with her antibodies. This is what we did NOT want. The plan was to start her blood on dialysis tomorrow, but because of tonight's episode they are starting tonight. In fact, in a few minutes. PLEASE PRAY for kaidence. This treatment could once again drop her BP and its already low.

For now I think that is all. I am exhausted and figure we still have a long night ahead of us. This brings back too many memories and emotions. I am scared, I am sad, I love my little girl.
Thank You all for loving Little Miss K!

Rejection Update!

It turns out that Kaidence's rejection is much worse than we originally thought. She had her cath this morning, is currently having a PICC line placed and then she is being moved to the CICU. We will know the severity of the rejection more accurately tonight. We have been told to plan 1-2 weeks in the hospital. I will let you know the results when I get them tonight. We are waiting to see her. I keep going over and over in my mind what I missed. Did she have warning signs earlier that I missed? I don't think so. She has done so well, its hard to see her healthy heart sick.

Thank You for your prayers, we need them.

REJECTION!

Please keep Kaidence in your prayers. We drove down from the cabin last night to PCMC after we noticed some changes in Kaidence. It looks as though her body is fighting her Beautiful Angel heart. Her heart is in rejection and Kaidence has been admitted to the hospital. I knew it was going to be a bummer visit when they put us in our 'bad luck' ER room and yes, we have certain rooms that bring us good luck. Anyhow, when they came to me and told me her heart was large, it made me sick. This is our reality with transplant. We knew when we went into it that we were trading one basket of problems for another. However, we have been extremely blessed and this is the first time K has been admitted for rejection. I guess deep inside you always hope that your child will somehow be the one that goes rejection free.


They have started her back on heavy duty immunosuppression (so I am back to being a GERM FREAK......ok, not sure I ever stopped that one). But seriously, we will have to be very careful again with who comes into our home for a little while.

The plan for today is to take Kaidence into the cath lab around 11 and biopsy her heart. This will tell us what type of rejection she has (cellular or antibody).....we are hoping for cellular.


We are so grateful for her beautiful heart. We know that it came from a tough little guy that too played hard and lived life to the fullest. We know it is strong and as Kaidence always says "My heart is Happy". And in the end....that is what matters!

Thanks for your prayers, we will keep you posted.

DADDY GRADUATED!!!!

It's official, my hubby GRADUATED with his degree. Its been a long journey with everything these last few years but you stuck with it and now ITS DONE!!!!!!!!!!!!!!!!!!!!!!!!!! Most of all, I am PROUD of you and I LOVE YOU!!!

* Kaidence is doing GREAT!!!!!! Holy cow, I cant keep this girl fed. She is an eating machine. I must admit that I am not use to feeding her so much. Tonight at dinner she ate more meat than anyone at the table. She LOVES meat!

I have had many people think that Kaidence must have had her surgery because her voice is noticeably louder and much clearer. It is still softer when compared to other children, but for her it's a major improvement. We feel so blessed by the fact that her vocal chords are now healed and all the concerns that we had are starting to resolve themselves because of this. What a blessing.

Kaidence just finished her swimming lessons. She loves the water and loved going everyday. She also got her first tan line despite all of my best efforts to slather her. Everyone needs some Vit D, right? Sunscreen is part of our daily routine. Due to the fact that she is on immunosuppression drugs, she is at a higher risk for cancers. Skin cancers being one of the big ones. So therefore we have been instructed by her docs to keep her covered and we do. At least she hasn't burned. It has protected her that much. People often comment on how pale she is, I just tell them that she's my little vampire. After all, vampires are 'the thing' right now.

Some History on her vocal chords

Kaidence was SUPER grumpy last night coming out of the anesthesia, WOW! She was very upset that they put her IV in her foot and not her hand. The moods swings were a little more than I had seen with the versed wearing off in the past. However, awhile after we got her home she seemed to click back into her normal, sweet self. She was a hungry stinker and had 2 bowls of Captain Crunch and some cheese (and she wanted a taste of Coke...no idea where that comes from). So much for slowly getting in to her regular diet. But she did notice that she didn't have an owie on her neck.

So a little history leading up to last nights events for a better understanding. Back in 2007 they started scoping Kaidence when she was in the CICU trying to figure out breathing issues, digestive issues etc. After her transplant they once again looked closely at things because she could not clear her own secretions. At one point a trache was discussed, but very briefly. It was determined during these procedures that Kaidences right vocal chord was indeed paralyzed. He then gave us a year for some slight possible recovery of it, but after that no improvement would take place. So when we took her home post transplant Kaidence was not allowed ANYTHING by mouth, because she could not swallow. When you have a paralyzed vocal chord it affects, your O2, swallowing (your airway never is completely closed) and speech. All of which Kaidence has really struggled with. Months into being home in 2008 Kaidence would undergo all the fancy swallow studies to see if it was safe for her to eat. All the while it being reconfirmed that the vocal chord on the right was paralyzed still. Last summer Kaidence had her tonsils and adenoids removed by a different doc. At that time he also noticed the problem and then referred us on to this other doc for the repair of the chord.

About 2 months ago we took K in to see this doctor. He is the same one that saw her all those times in the CICU and did many of the swallow studies for us. At that point in time I explained that I felt her vocal chord was better because Kaidence now has a faint cry and voice verses nothing at all before. I was hopeful, but then he scoped her that same day. He then told me that her vocal chord was still paralyzed and after reviewing records, it was just as bad as it was originally. It had made NO recovery whatsoever. At this point it was so bad that it was laying off to the side and not in the place it should have been. Your vocal chords make a "V" shape when open. That was when we knew that the surgery was needed to repair this.

We had high hopes that this would fix all of our current issues with Kaidence and so last night when we found out it was no longer the case, I was not too sure what to think. Was this just some freakish misunderstanding for the last 3 years and after all the scopes that confirmed this problem? Or was this another answer to prayers and evidence of the power of the priesthood? Looking back at her blessing last evening before going in, I prefer to believe it was the last situation.

Like I said last night, the doctor was shocked himself. He was not expecting this situation. Both vocal chords were where they should be and both vocal chords moving as she was breathing on her own. Both of which have never been seen before on Kaidence. So needless to say, we are anxious to look further into this situation. We count our blessing that he double checked before he cut. We will meet with this doc and K's GI doc together to discuss what to do next. Likely she will definitely have the 'floppy things' surgically removed. It is also very likely they will want a full GI scope on her and many other test to confirm if this is truly due to reflux. She was checked before to help determine if a Nissen was needed with her G-tube, but it was then determined unnecessary. He does not think that getting the reflux under control will make much difference with the choking and soft voice, but as we know....anything is possible.

So we are done sitting around in the house and letting our summer pass us by. We start swimming lessons next week and look forward to the vacation that was canceled for all of this surgery stuff. I am ready and I am pretty sure my kiddos are too. Thanks for always sending love and prayers our way!

NOT WHAT WE THOUGHT!

As you all know, Miss K does not follow the rules.......she makes her own. A little over an hour into surgery the doc came out and explained that he no longer thinks that K's vocal chords are paralyzed. He seemed very surprised. However he did find some weird swelling and floppy things in her throat consistent with acid reflux. The floppy things can be surgically removed, however not tonight. We need to do some investigating into whether this is really the case. Removing the 'floppy things' will help improve her sleep apnea and could possibly help her sleep apnea. He however does NOT seem to think that it will help her choking issues and her very soft voice. Bummer! That part has me concerned.

The plan, we will go home tonight once the anesthesia wear off and then meet with the surgeon and her GI doctor to get a plan in place. Post transplant she use to vomit 8-10 times daily, but has not for a long time. We had to take her off reflux meds because it caused her white count to drop dangerously low. We haven't seen any problems with reflux, but I guess you never know.

I am tired, smell like pee and need to go be with my baby girl. I wonder if she will be shocked by how easy her surgery was. Do you think she will be sad that she still doesn't have her Mermaid voice?

In Surgery!

They took Miss K in around 6:15 this evening. The doc said that it could take anywhere from 2-4 hours depending on how small the nerves are in her neck. I have a feeling that they will be pretty small, so I am not expecting anything too soon.

Kaidence did amazingly well today without being able to eat. She is such a sweetheart. She never complained, cried or threw a fit. She is such a good girl. Before surgery Mike and I took her to see Toy Story 3. She loved the movie and then we drove straight to the hospital.

We checked in and then the nurse gave her some versed, but nobody came to take Kaidence into surgery. Therefore, my sweet little Kaidence peed all over my lap. I think she tried telling me, but her speech was so slurred it was hard to understand anything. She had that oooopps look on her face, but thats ok. Just looks like my water broke and I now smell like urine.

Thanks for checking in on K, we will keep you posted if we hear anything.