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.

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!