A GOOD DAY!!!!!!

I know, I should have posted long ago. The truth is that Kaidence looks so much better and therefore I have been BUSY! Yesterday she had another treatment on her blood. This time everything went much smoother. She started waking up a little more yesterday. She had a very hard time coming off the narcotics and was having some pretty bad night terrors (med side effect). She had no idea who Mike and I were, yet she was yelling for mama and dad. Her blood sugar is getting better and they have taken her off the insulin. As of midnight, Kaidence was taken off the Milrinone (heart failure med that helps your heart squeeze). Her echo today looked the same as 2 days ago, but the doc is happy with that because the one 2 days ago she was on the milrinone and today she wasn't. Therefore, her heart seems to slowly be getting better.

Today, Kaidence is more like herself. She looks pretty dang good in fact. Many are relieved at how Kaidence is turning around. They all said they were very worried. Some nurses called to check on her as well over the weekend. I am glad she is so loved and cared for.

Today we cleaned all the tape marks off her, gave her a bath, did her hair, painted her toes, she has even had a little to eat. She is still very weak and has a hard time walking a few feet, but she will get there. Her poor body is so bruised from trying to get central line access. She does have some issues with the skin around a line that they are closely watching for infection.

So the plan is to do her blood dialysis in the morning. Treatments will continue this week. She will then have another heart cath on Monday to see if the treatment is doing what it should. she will then have 2 days of IVIG treatment.

That's about it for the day. Lets just hope these treatments are working. Thank You for the prayers, if you could see what my eyes have seen this last week... you would never doubt that prayers are heard. I am amazed by her turn around.

A New Day.

First, I want to Thank everyone for once again praying for Little Kaidence and our family. Your prayers have been felt.

After thinking that we were losing Kaidence on Thursday, I have yet again had much time to ponder. I am so grateful to be where we were, when we were. I am so grateful to have the Dr. P there. I didn't realize until last night that they pulled him out of the ER when K had her episode. However, the moment he showed up I felt so much relief. I totally trust him and he knows Kaidence.

Mike and I were able to get some sleep last night, together on on our twin bed. Kaidence is looking better and this morning she was .......EXTUBATED!!!!!! She is still pretty drugged, but I can tell she is happier.

Her echo this morning showed that her heart is still very big and her valve is leaking a great deal. That however is to be expected. Our hope is that with time and treatment, it will resolve over the next few months. Her labs are looking better. She is still on insulin because high doses of steroids have thrown her blood sugar. She is still on IV meds to help her heart pump. I am happy with her progress, it will take baby steps but we are heading in the right direction now. Hopefully, her heart can make a full recovery.

We will be in the CICU for at least a week, possibly longer. Her next dialysis treatment for her blood will be tomorrow morning. We are praying that these dang antibodies will go away and that these treatments will help

Thank you again for everything. Our hearts are full once again.

We WILL have a good day.........

I think its safe to say that we are TIRED!!! Went to bed about 4 AM after 2 failed attempts to do the dialysis on her blood. The line they placed last night, is not working for what they need. She had a blood transfusion last night( thanks to all those that donate blood). New line this morning and getting ready for attempt 3 for the dialysis. K needs this to work to get rid of her naughty antibodies and we need to get this into her system quickly before her heart failure gets worse.

My emotions are, shall we say...........VERY UNSTABLE. Being 30 weeks pregger most likely does not help. It is heart breaking to see Kaidence this way again. Its unsettling, it scares me. I think I am haunted by the fact that Kaidence just 48 hours ago was running, dancing, swinging on the swing set at the cabin and now........... I keep thinking, why didn't I give her another big hug yesterday before her heart cath. I try to embrace those moments with all my kiddos, but for some reason when something like this happens...it seems that you never did it enough.

Kaidence is not fighting the breathing tube today. She seems comfortable and for that I am so thankful. She received a blood transfusion yesterday because a lot was lost into the machine during the dialysis last evening. We are taking one day at a time and are hoping and praying that later today she will start to turn around.

I take so much comfort in knowing that she has so many doctors and nurses that love her helping in her care. Even if they aren't directly involved today in her care, they are still stopping by to check on her. We love the great people here and we know that they will do all they can for her.

Today your prayers are being felt once again. Its amazing the gift of comfort they can bring. Its moments like this that I know Heavenly Father truly walks beside me. My heart is overwhelmed by love and mercy. I am once again humbled by these experiences.

Like I always say "Faith makes things possible.......NOT easy. Thank you all for praying for my baby girl. I guess she is NOT a baby. Last night when she was intubated the nurses keep calling her "Baby Girl" because that is what they always called her. Kaidence briefly tried opening her eyes and she shook her head as she tried to mouth "I not a baby". I know that she is still in there somewhere.

Thank you, we feel overwhelmed by your love, prayers and support. Thanks for loving her. We will keep you posted.

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.