Strength.Courage.Hope: No words..

Friday, July 8, 2011

No words..

I have no words for how I feel. Well actually yes I do I just can't explain it. I don't know what to do anymore..Ever since extubation and after the nap he took, Kayden has been moving uncontrollably, he will not talk and he doesn't recognize anyone. He doesn't respond to his name, he doesn't know what is going on at ALL!!! He improved a little where he actually focused for a little bit on tv these evening and this morning he wasn't doing that. But by the time they gave him meds to help him rest, he was back to moving around and actually like 'trying' to sit up but he is so uncontrollable that we are afraid he's going to fall out of the bed. They have no idea what it is. He had a CT scan last night and nothing showed up on that. They got some blood & are planning to do an MRI in the morning so they will have to reintubate him. I just don't know what is going on. They said they've seen this behavior when someone has a stroke. But the CT didn't show signs of a stroke so maybe the MRI will tell more...I just don't know what it could be. But the stroke scenario sounds a little more realistic than anything else they have said...I have prayed and prayed & prayed when I can't do it anymore. And I'm waiting for God to answer those prayers and for Kayden to be okay and for Kayden to get his new heart. And when things get bad after praying for them to get better how can I not be frustrated? God doesn't give us more than we can handle? Why is he testing me so much right now? I don't know what to do I've handed this all over to him but I can't let go myself I can not. I will not let go because I'm his mother and I will do whatever I can even if it is analyzing him and trying to rack my brain for answers..like I have been doing all day even if my theories sound stupid i still ask. I know how Kayden is and I know to always expect the unexpected with him which I have told doctors over and OVER again.. I just don't know when they will start listening to me. They have said since day 1 that Kayden is a very unique case and they haven't seen anyone like him & I'm starting to believe them more and more now.
Please just continue to pray for Kayden and pray this gets resolved soon & he gets re activated on the transplant list <3

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About Me

My name is Misty. I'm 26 years old from Roanoke, VA. I am a single mom to my little ones. I've got 5 kids. Alexis, Kayden, Tavion & Isaiah. Kayden is my little Angel, he went to live with the Angels July 14, 2011 waiting on a heart transplant, he was 3.5 years old. Alexis is my oldest she is almost 9, Tavion is 5, Isaiah is 4, and Elijah is 4 months. I enjoy reading, watching movies, blogging, quiet nights(when possible), and long drives listening to music. I started blogging to tell people about Kayden's journey with a broken heart, now it's about life with him as an Angel & how I deal and you'll also get to know my other little ones. You can also visit Kayden's page at www.kaydenjames.weebly.com or on facebook at www.facebook.com/KaydenJamesCHDAngel

My Family

Little Miss Lexi

Alexis is my first child & my only girl. She was born on February 9, 2006. I found out I was pregnant with Lexi 2 months after I had a miscarriage. I was quite surprised that I was pregnant but I was excited along with scared and nervous. She is the best big sister anyone could ask for. She helps with her brothers & she helps me if I need her to..She is a very smart little girl as well, right now she is in preschool. I can't believe my baby girl is almost in Kindergarten. It's true that time doesn't stop for nothing.

Superman

Kayden took his first breath on December 21, 2007 and took his last breath on July 14, 2011. Kayden was born with a bilateral cleft lip and palate, dilated cardiomyopathy & a displaced tricuspid valve with tricuspid regurgitation. He had 6 surgeries in his 3 1/2 years. He had 3 to complete his cleft lip/palate, pyloric stenosis at a month old, a preauricular cyst removed & open heart surgery on March 17, 2011. He always had a smile on his face no matter how many challenges were thrown his way. I miss my child more than anything in this world. I love Kayden more than words can ever say. I am broken and will never be repaired, he was my life & my heart is shattered since he lost his battle with his CHD. I'll never stop telling his story because people need to be aware of what is possible & I would like to think that Kayden's life will save another child.

Crazy Tavy

My middle boy, Tavion James. Tavion was born on May 13, 2009 at 37 weeks. He was my biggest yet shortest baby born lol! He is a handful right now he is at the age he wants to get into everything. Although he is small still he holds his ground and has an attitude. He is starting to get into the terrible twos which is never fun but we will survive. He's an amazing little boy and always keep us smiling. Tavion has no health problems that we've noticed and hopefully he continues to stay that way.

Superman's Baby

Isaiah James was welcomed into the world on December 16, 2010 at 3:02 a.m. He weighed 7 lbs 11 oz. & was 20 1/2 inches!! He had a head full of beautiful black hair (just like his sister did). Kayden absolutely loved him and called him his baby. He's so full of energy, loves his brothers and his sister.
My Rainbow

Elijah was born on August 22, 2014, he was 7 lbs 14.8 oz. He's an absolute blessing. Elijah is my rainbow baby, I was so unsure about having more kids after I lost Kayden, but now I see Kayden picked this little fella to send me. I couldn't imagine my life without him. His smile brightens up my darkest day.