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!!!

Good News!

Kaidence went in bright and early this morning for her heart cath. Everything went well. Her pressures were so much better. We just got the biopsy results. Her antibody rejection is only
"Suspicious AMR" where as last week it lights and sirens positive AMR. We are SO happy with the results, considering we are short 2 blood dialysis treatments. I have had so much anxiety today. The plan has changed a bit. Tonight we will start some new treatments called IVIG. She will get one tonight, tomorrow and the go H _ _ _ _ on Sunday. A whole week earlier than expected YEAH!!!!!! Kaidence has a BIG list of meds once again, but not as many doses as post transplant. That will taper off over time. She cant wait to get home and see her doggy Kirby. Next Friday, Kaidence will have another heart cath and they will once again biopsy just to be sure those antibodies aren't trying to pop up again. Appointments with cardiology will be weekly now for the next little while. I am ok with that, because I am a bit more paranoid now. I prefer they closely watch her.

Today Kaidence has had a good day. She is eating well and keeps me busy. She is patient and kind to the nurses and they all seemed amazed at what a polite little 3 year old she is. She never throws any fits here and always wants to help her nurses. Those doing her dialysis treatments were also amazed at what a good natured, sweet little girl she is. I am proud of my Kaidence. I never want her to be a "cardiology brat". We work hard to try to avoid that.
Doesn't mean she's always on her best behavior, but no problems this trip. Today she was SO excited for me to take her up to the patio and ride a bike. We had to scrub the thing down so she could ride it, but it was so worth it. The sunshine felt great as well. Tomorrow we are hoping to go up again and Kaidence will get to paint the walls and concrete of the patio until her heart is content. She has become a little artist this hospital stay. Yesterday she painted, used stickers, made a magic wand and had fun with glue and glitter. Lets just say it looked like "Fancy Nancy" threw up in her room. In fact, she still had glitter on her body this morning when she went to the cath lab.

Thank You all for your prayers this week. It was hard and unexpected. It was heartbreaking to see Kaidence so deathly ill. I am so grateful for prayer, fasting, great family and friends. Thank you for always being there for us. We could not walk this journey alone.

Heart Cath in the Morning

Oh, I am once again ready for bed. So I will keep this short and sweet. Today Kaidence had 2 different attempts to do dialysis on her blood. Both attempts failed because her lines aren't working well. Because these lines go into her heart and are so invasive to redo (they are not IV's) cardiology has come up with a new plan. Its not what they ideally wanted, but they hate to put her through more procedures just to get working lines. Kaidence has only had 3 of the 5 dialysis treatments.

Here is where we once again hope you will pray for Kaidence. Tomorrow morning at 7 am Kaidence will go in for another heart biopsy. With no access for the dialysis we are hoping that the 3 treatments she did get have gotten rid of the antibodies. If not, she will under go more procedures to place new lines. These lines are risky because they can carry a great risk of infection, so the sooner you can get them out....the better. The docs are really happy with how well K is looking. Her labs look great and so they are hoping that things could possibly work out for tomorrow. If that is the case, she would likely be coming home in the next few days. If not, we will just cross that bridge then.

That's today's news. Hoping that the cath goes well ( after her episode, I am pretty nervous for the morning) and that their are NO MORE NAUGHTY ANTIBODIES!!!!

Busy, Busy

I knew I would forget everything that happened yesterday, but I was just too tired to post. Yesterday Kaidence got her 3rd blood treatment. It went well. The gallop that the docs could hear in her heart beat is gone (good sign). We were moved to the floor sooner than they expected because she has made such good improvement much quicker than thought. I must say that it is nice having our own bathroom, because I live in it! I had an OB appointment and the babies amniotic fluid is getting low. Therefore, I have been instructed to rest (ha, ha) and drink even more!!!

Today, Kaidence had some dressing changes on her central lines. Her labs look good and her echo had improved from the one 2 days ago. Her heart looks like its starting to slowly recover its function. Did I thank you yet for the prayers? They are slowly starting to taper her steroids. Kaidence is back to being Kaidence. Today she wanted to run the halls, but she cant really go to far because of her immunosuppression. The lines in her leg make her hobble around, but she is happy. We spent the day convincing her to eat the yummy food, trying to get her to drink, getting a new g-tube, echo, dressing changes, unclotting her central line in the neck, coloring, painting, putting stickers EVERYWHERE, meds, meds and more meds.

Tomorrow she will get another treatment on her blood. During these treatments she is hooked up to a machine and they slowly pull the blood out of her body through her neck, filter out her plasma and replace the blood through her groin with new plasma. Monday she will have another heart cath to see how it is working and check for rejection. It turns out that her body has made 2 different types of antibodies against her donor heart. This treatment should pull them all out of her blood and hopefully with extra meds we can trick her body and get it to stop making them.

So basically that's the plan. Kaidence has made such an amazing improvement. I am so glad that it is this week and not the last. I think it will take some time for me to relax a little about what happened days ago, but slowly I will work through it and get back on track. I don't want to live fearing every moment knowing how quickly it can change. I had just reached a new found confidence in Kaidence's health and Independence when this happened. It only took 2 1/2 years. Hopefully, I can mentally get back to our normal as soon as possible. Thank you everyone for all of your support. I could never imagine doing this without you.