A Glimmer of Hope for Kya!

Last night when I tucked our oldest daughter Jenna into bed she shared with me that she made a prayer list & that Kya was on the top. She said all throughout the day she would pray for her. God kept this burden upon my daughters heart….and upon many of yours.
I shared with Jenna last night as we joined hands to pray one more time for Kya before bed that nothing is too hard for our God. We prayed for healing & asked our merciful, powerful Father once more, that her heart would begin squeezing & the right amounts of oxygen would get to her body.
All these prayers going up before the throne of God on behalf of Kya are powerful & effective. Let’s keep fighting on Kya’s behalf!

Behold, I am the LORD, the God of all flesh: is there any thing too hard for me? Jeremiah 32:27

The effectual fervent prayer of a righteous man availeth much. James 5:16

Elyana & I with Tracy & Kya in China. (Both girls 2yrs old-Kya is oldest)
I love this pic. I remember crying right before this when I held Kya for the 1st time. She was so tiny & frail….but has come so very far since then! We know she has SO far to go yet, but our mighty God is fully able!!

Update from Kya's Mom:

Today was unbelievably difficult. I have spent a lot of time the last couple of days on the phone with nurses and today I was finally able to chat with Kya’s cardiologist which not only answered a lot of questions, but gave us the first glimmer of hope.

As you all know, Saturday night, Kya took a very drastic downward turn. She started showing signs of heart failure and started to decline very fast. For the next couple of days, Kya has been very restless, still in a steady state of rapid decline, fluid levels way off, dehydrated, unable to tolerate feeds, heart rate as high as 170, breathing very labored, and overall just miserable and tired but unable to rest. As a result of her dramatic turn on Saturday night, the heart failure team was called in to start taking over Kya’s care. They made some very drastic changes in Kya’s meds and care and Kya went through a little bit of withdrawal from some of the meds being changed which caused some of her restlessness. But the team realized that they needed to change up things and quick because Kya’s decline was very rapid.
All day Sunday and Monday, Kya was unable to get adequate rest and was very moany as she was in obvious discomfort and pain. It broke my heart to see her so uncomfortable and to see her struggling so much for air. Last night the plan was to try and wean Kya off her nose cannulas and start her on a CPAP mask which allows for a bit more pressure push which would hopefully alleviate some of her breathing problems. When I was told they were going to place the mask on her, I was like….have fun with that.
Well mama bear was right. I learned this morning that they spent the entire night attempting to get Kya to keep the mask on and she spent the entire night removing it. Not a good thing as she is back on the nose cannulas and not able to get adequate air flow right now.
I was able to skype with Kya today and she was so tired and lethargic that she was literally falling asleep while trying to look at us on the screen. I was so not thrilled with this. But later tonight I found out some good news and I am clinging to it with every part of my being.
Kya’s cardiologist told me that her last ECHO revealed a flicker of function in her ventricular function. This is her squeeze part and it has not shown any signs of life since her first heart surgery. I could not believe that after a month of doing nothing, nada, zip, zilch, it started to show signs of life even though they were real small. It’s really nothing to change her status at this point, but it is a start. I then asked her Dr. if he thought that Kya’s heart could really restart after having been basically dead for the last month. He told me YES!!!! He said he has seen children have a long battle with it but with the combination of the right meds and the adequate resting of the heart, the heart can restart. I was in shock and just thanked him so much for telling me that. He was very quick to tell me that Kya is in no way out of the woods right now and her condition is very serious at this point, but it was definitely hopeful to see a bit of movement. So we are clinging to that hope and pleading with God that He allow that function of her heart to come back to life 100% on both sides. Right now her left ventricular side is doing nothing and her right ventricular side is less than 50% working. She is still in an active state of heart failure but later today her fluid levels came back up and she was fluid positive but not to the point of messing up her lungs. She had been able to sleep during the day and not be so restless. Her heart rate came down from 177 to 140. PRAISE GOD!!!! Finally, after 4 days of constant bad news, there was a glimmer of hope. The progress she is showing is almost unmeasurable but it was there and it was worth reporting.
The other bit of good news was that when I discussed with the Dr. the fact that we will be moving around this time next year we had to face the reality that Kya could still be in the hospital at that time. I asked the Dr. what are we looking at if we get moved and she is still needing to be in the hospital? He said we would cross that bridge when we got there but that if worse came to worse he could see about having her transferred to Duke, in North Carolina. I just about fell off my chair. I could not believe that out of all the children’s hospitals he could have mentioned, he mentioned Duke. Carlton and I have no clue at this point where we are going next and that has only added to this whole ordeal as we are now very much aware of the need to be stationed near a place where Kya can receive good care. But we now know that if we are stationed somewhere not near a children’s hospital, Kya can still go to Duke which is very near a lot of our family. I was just crying and praising God for this information, hoping we don’t have to use that option because we are still hoping Kya will be out of the hospital long before our next move. It was almost like after having four long days of famine, we were all of a sudden feasting off the knowledge that God is still working in the life of our brown bear. He is still working out the details and working through the Doctors to find the exact combination of meds that will be Kya proof, not an easy thing to do at all, but not impossible for God. I can’t tell you how much I needed that reminder and how much WE needed to hear of a glimmer of hope.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s