We are Fasting for Kaidence Tomorrow

I meant to blog earlier about this, but this week has been AHHHHHHHHHH! However, as of today Super Saturday is DONE!!! Thanks everyone for your help.

Tomorrow we will be having a fast for Kaidence for anyone that would like to join in. I have felt strongly that we needed to do so, but have put it off because I feel guilty asking....yet again. However, I know its power. I don't know exactly why, I just keep getting this feeling that we need to do it. So we will. We do what we can, and the Lord will do the rest according to His will.

Kaidence had her IVIG treatment on Thursday. The treatment itself went well, however this evening she seems to be having some reactions to it. I walked in the door exhausted from today, only to find a sick little Kaidence. She laid on the floor crying (NOT a typical Kaidence thing to do.) She has a terrible headache and started vomiting. Because of the recent rejection I called cardiology. They said its a reaction to the IVIG treatment, they have seen another child react the same way. The headache may become very severe very quickly so we will be giving medication for that around the clock for the next 36-48 hours regardless of symptoms. If the headache cannot be controlled and fluids or meds cannot stay down then she will need to be admitted to the hospital tonight. I am praying that we can all stay home tonight. I am wiped out!

Back to Thursday. Kaidence's heart function looked good again on the echo. However, still nothing has changed in regards to the hearts size and the leaking heart valves. Due to the fact that nothing has improved in the last month, her cardiologist is not sure that it will ever improve any further. This could cause issues down the road, but we will cross that bridge if and when we need to. Hoping that we never need to cross it.

Other than that, Kaidence is doing well. Once her "soldiers" get stronger she wants to go to primary at church and ride the TRAX train. Those are her only 2 request.


The boys seem to like school. McCaden is still full of ALL the energy in the world. He is a good help and is testing his sense of humor out on everyone. Camden turned 6 on Friday and was so excited to bring treats to his class. He is my little sweetheart. He has the cutest grin, he can never get away telling a lie because his face always gives it away with that darn grin of his. He is a great listener, usually only have to tell him once or not at all. He could talk the ear off of anything (like his mommy). Happy Birthday my sweet little man! Mommy Loves you FOREVER!

Thank you all for all of your love, prayers and understanding.

Tomorrow's IVIG Treatment

Tomorrow we will head up to PCMC for Kaidence's IVIG treatment. It will make for a very long day, but we will be prepared for ways to stay busy. She will also have her regular clinic visit. I am hoping that they can still do it. It seems that she has caught Camden's cough and icky nose from last week. Please pray that this treatment will go smoothly and do what it needs to do for Kaidence's heart.

Baby and Cardiology Update

Once again, I meant to post much sooner. Life has been CRAZY! My time seems to barely allow me to do the things I HAVE to do, no time for extras. Blogging is an extra. Between Kaidence and myself we have doctor appointments 3-4 days a week. To tell you the truth, I have had to take some time to deal with my emotions and fears with regards to Kaidence's future. In fact, it took me crying myself to sleep a couple of nights. However, all I can do is my best to care for her, love her and teach her life's lessons.....the rest is out of my hands. What is meant to be, will be. Sometimes that is so hard to deal with and at other times it comes as such a relief.

A quick pregnancy update. I have Non Stress Test 2 times a week for the baby. Fluids have been up and down. However, more time spent being down. Last week I had my last progesterone shot, so we will see what my contractions do. I will be 35 weeks and have made it past the time I delivered McCaden. Hopefully, I can make it at least 2 more weeks. The kids are getting excited, especially Kaidence. So that is the baby update......now for the Miss Kaidence update!

As far as her heart goes, things are still the same. I am a little frustrated that her heart is not recovering quicker. It really hasn't made any improvement since coming home, but it hasn't gotten worse either. I am worried that her heart rate is still high, the vessels in her neck come and go. Her heart is still big and therefore her valves are still leaking. However, her heart is functioning (squeezing) well and so that is a great BLESSING. Cardiology wants to keep Kaidence on her steroids and heavy drug doses longer than originally planned, because her pressures in her heart are so high due to the rejection. It looks like she may be on these for the next couple of months. Longer than originally thought. They are also starting her IVIG treatments next week in hopes that things will start to move along with regards to recovery and treating the antibodies and rejection mor aggressively. So because of these treatments Kaidence is no longer able to get her flu vaccine for this year (scary) and she is very immunosuppressed. We will just have to stay home, keep germs away and hope for the best. Please be understanding if I get a little more freakish about sickies as flu season approaches. Just remember that a virus is what started it all and is the reason she needed a new heart to begin with. So yes, it scares me.

Kaidence is flying high on her steroids. I know most others have the opposite problem with grumpy kiddos on the roids. Kaidence seems to be very hyper on them. As usual they make her hungry and I think she has gained about 3 pounds since being home. Her face is very round and she has a cute little double chin. She seems to think she is the luckiest girl in the world. She is so upbeat and full of herself. She talks non stop and has the funniest little giggle. She misses going to primary on Sundays. I think that is when she is reminded most that her heart needs to get better. She understands the whole germ thing. She has spent time outside painting with her brothers (she loves art stuff right now). She has also spent time in her playhouse. I feel bad because the neighbor kids usually play in it with her, but for now its just for her and her brothers. She also loves to go out and ride her bike. This girl just goes and goes. When I nap, she lays in bed next to me and watches movies. She will spontaneously grab my hand and kiss it or lean forward and kiss me on the cheek while I sleep. She doesn't know that I know she is doing it, she thinks I am still sleeping. Its those moments that I just savor the sweet tender spirit and personality of this little girl.

I am grateful that she IS so happy, crazy and full of life. She is such a sweetheart.


Our hope is that Kaidence can continue to stay healthy and that her heart may start to heal and recover if that is what is meant for Kaidence.

Todays Biopsy Results

I hope this post makes sense, because I have an awful migraine and am sick to my tummy. I wanted to update K's blog though.

We got to the hospital at 6AM, she was first case in the cath this morning. I walked her in, sat with her as I held the gas to her face and she held the gas to 'bear bears' face. Before, I knew it she was snoozing. No tears, no fear it went smoothly.

After her cath we met with the doctor that did it. He seemed concerned because Kaidence's pressures in her heart were higher than last Fridays. He worried that her heart could possibly be getting sicker. Hearing this news just made me want to scream and cry. Ok, I did cry. Things with his pregnancy are getting a little worrisome in regards to early labor and the last thing I need is another sick kid in the hospital. The thoughts of being back at the hospital and missing the 3rd straight first day of school........aghhhhhh! He wanted to wait and speak with her cardiologist and see what she thought.

Kaidence came out of the anaesthesia beautifully. We have found this new cocktail that works great for her. She woke up today, looked at me and within 10 seconds smiled and asked for her chocolate milk I had promised. She was happy and that was nice to not fight the tears that come after.

Around 12 noon we went down to meet with her cardiologist and for K to get her echo. I have been told the echo looked the same as last time. Dr E felt that Kaidence looked too good to have pressure that bad. She is not sure what happened in the cath but feels hopeful that we are still heading in the right direction. Kaidence's BNP (heart failure number) has significantly dropped, but still has a little ways to go. She reminded me that this could all take months to repair. We will watch her closely and call if we have any concerns. What a BLESSING!

Kaidence was not thrilled with the idea of heading home. She kept asking when she could go to her room. finally we told her she could have chili's Baked Potato soup and she left the hospital premises willingly.

I guess I should add that her biopsy results were just called into us. It is still the same as last time "suspicious". We know that Kaidence is holding her own with all the meds and that the antibodies are behaving currently. Hopefully things will continue to mend and that her heart can eventually make a full recovery.

It sounds so redundant, but Thanks so much for the many prayers that have been said for Kaidence and our family. Today, they sustained me and kept me from losing my mind.

Heart Cath this Morning

Heart Cath and heart biopsy first thing this morning to check for rejection. May not have laptop to update until later. Please keep her in your prayers today.

An update from HOME!

So obviously my adrenaline hit the floor and I have been exhausted. Sorry for no post. Kaidence came home from the hospital Sunday afternoon after playing the "we are out of some of her medications" game with the pharmacy. Needless to say, she is back on a lot of medications. We spent that night labeling syringes and drawing up meds.

Kaidence is doing well. As they removed her IV Sunday morning, she finally decided that she wanted to go home. She was excited to see her doggy and her brothers. Camden even let her wear his Sponge Bob Pj's to bed that night. They were huge on her, but she was thrilled. Kaidence is having a hard time understanding why she cant go to church on Sundays or go play at the neighbors like her brothers. She cant go anywhere because of her lack of immune system . That puts a few kinks in things, but we are SO GRATEFUL to have her home.

Kaidence is eating well and those little steroid cheeks are making a come back. She is very active. Her heart rate is still increased but the doc said that her heart is still large and that it will take time for that to heal. Friday morning Kaidence will have another heart cath to check for rejection. I pray that these meds are keeping it under control and that she can stay out of the hospital.

My pregnancy is starting to give me some problems and my NST's for the baby have been moved from once a week to twice. My fluid is getting lower and I am supposed to lay around, take it easy and drink a lot. Not that possible with Dr appointments 3-4 days a week, soccer and kiddos starting school (cant we have FULL DAY KINDERGARTEN)? Seriously, its ridiculous, especially on early out Friday. Just my opinion though. Anyhow, Camden is excited and so that is what counts.

So basically things are fine, just crazy like everybody else's life. Therefore, NO SCHOOL SHOPPING has been done. BTW.....school starts on Monday. As long as we are moving in the right direction, we are happy and content to juggle what we can. Our lives are blessed greatly. It feels so great to all be home together. I realize that when you are away from home you miss the little things like soft 2 ply toilet paper. Yes, we splurge on soft TP. Also, hair conditioner......what a luxury. Most of all I loved snuggling with everyone in MY bed. Going to bed each night and knowing that all my kids are tucked in under one roof.

I have to Thank my wonderful husband and kids that made sure the house was spotless for Kaidence to come home. Laundry done, put away and everything. He even cleaned out my laundry room. It felt wonderful coming home.

Thanks for checking in, we will let you know what happens on Friday!

A small little problem....she doesnt want to go H - - -!

This morning started out a little rough for Miss K. She no longer has access to any lines and therefore IV team spent far too long in our room this morning. Too many veins have been blown out this last week and they can no longer get ANY IV access to her for blood draws. The poor girl has bruises everywhere. I think they tried 5 or 6 IV's this morning. So therefore, cardiology requested that all morning labs be canceled. We will just keep our fingers crossed that things will continue to be stable until Friday. She has a junky cough and some fluid in her lungs but is keeping her O2 levels where they need to be. So far they are just watching it.

Tonight she is TRYING to get her last IVIG treatment before heading home, but the darn IV is shot. Knowing that she has no more access. We are ready to have her stand on her head to see if it will work long enough to finish. Fellow tx moms who's kids have needed IVIG, does it make your kiddos a little grumpy? It seems to do this with Kaidence. She just wants to be left alone.

Other than that, she has had a great day. However, we now have a problem. After getting to order whatever she wants and whenever, riding a bike around, driving in her little police care, glitter, painting, coloring and bubbles.......Miss K informed me tonight that she does NOT want to go home. WHAT THE HECK?????? I told her that I was sorry, but mommy was ready to be home. I haven't been home since August 1st. Not even stepped in the house. So to my fellow PCMC frequent fliers....stay away from child life and don't let your child have any fun when they come. What kid doesn't want to leave? Obviously she doesn't remember being intubated, the talk of crashing her onto ECMO or her mom once again pleading that she not die. Maybe they should have wasted some of her drugs on me, I wouldn't mind not remembering.

BTW, am I the only mom that finds herself living on 'uncrustable' PB & J sandwiches when here? That's all I seem to eat. Is it because it makes us feel closer to home and our daily routine? I think it must be.

Oh Kaidence. Your mommy loves you so. You make smile, you make me laugh and you also make me want to cry some days. Thanks for being who you are BUT, I am NOT letting you stay tomorrow!!!