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.

Going to Bed

I promise that I will update tomorrow. I am just too exhausted. Just know that Kaidence is doing better and we even moved out of the CICU today, sooner than expected. Thank You for your love and prayers. Hope you all have a good night. I am heading to bed now.

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.