Friday, August 20, 2010

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.

Wednesday, August 18, 2010

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. 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!