Kya has been surrounded by a whole team of doctors, an entourage of nurses, an entire army of prayer warriors, angels standing guard & watch over her….and most importantly a loving Heavenly Father who “neither slumbers nor sleeps.”
This week it was our specific prayer that the ” peace of God which surpaseth all understanding would keep her heart & mind through Christ Jesus” Specifically we began to pray she could come off of some meds, without panic, which would send her heart dangerously into more stress than she can handle. Our prayers have been heard by a merciful God, who isn’t finished with Kya’s little life.
We are praying now after Kya was opened up yet again….for healing for her aorta valve & for her heart to gain healing strength. Through those bleak moments of the past weeks, for this family….our God has reminded us that –through prayer mountains truly are moved…and as Tracy reminds us…we are changed through praying.
We will continue to fight for Kya through prayer, knowing our God is stronger than any odds, and it’s in His merciful love we trust.
Our family received this wonderful email update from Tracy (Kya’s mom)
Good afternoon to all. I am sitting back in my little spot in the ICU as I type this update looking out the window at a breath taking view of Mt. Rainier. Hard to believe that thing is a volcano and yet it is so beautiful. So today started around 3 am in the Keen home. I headed out the door around 4 to catch the ferry and thankfully made it in time. Stopped off to get some gas in Mukilteo and had the gas clerk tell me in a heavy Italian accent that pretty women should drink pretty water. I said, OK badda bing and headed back to the car. Traffic was pretty light this time which was nice and no rain which was great. It’s actually been a beautiful sunny day here in Seattle. I rode down in the car singing some praise songs at the top of my lungs with the radio tuned up so I could keep myself awake, and any unsuspecting pedestrians. Chatted it up with my brother on my new iPhone and overall had a good drive down today.
I was able to make it to Kya’s room before she was taken down for surgery and had a chance to pray over my daughter and to plead that God would take care of her and guide the surgeons. I will admit that I struggle with not knowing what will happen with my daughter because even though I pray knowing that God can take care of her, I also know God can simply take her. I find more and more that my prayers change from prayers asking God to heal Kya but pleading with God to help me be ready for whatever He has next in store for me. The reality of God sometimes answering prayer with the answer of no is very tangible to me, as I’m sure it is to many of you, and yet I don’t want to give up on believing that He can do above and beyond what I think possible. I want to walk right in the middle of believing that He can do the best for Kya, but pleading for Him to prepare me for something different. I think it was CS Lewis who said something to the effect of how prayer does not always change the situation, but it changes me in the process. So even though Kya’s situation has not “changed” much at this point, God is changing me in the process.
Open chest, close chest
When I saw Kya this morning, the first thing I noticed was how well her chest was healing and how she overall looked real good. It just pained me to know that in just a few hours, her little chest would be cut back into a second time. I wanted to see if the Dr. could just sew in a little zipper or something to make this a lot easier. Some good news is that for the past two days, Kya has only been on her sedation meds to keep her calm and she has not had to be paralyzed. She had finally begun to stop being so combative and no longer needed to be restrained to the bed. The Doctor expects that to change after this surgery and expects her to come out mad again since her chest will be open again and she will have some more tubes coming out of her chest area, but I am hopeful Kya is calm now and just able to rest.
Dr. Chen, Kya’s main surgeon, was away for the weekend at a conference. He flew back to Seattle last night and showed up bright and early this morning for Kya’s surgery. It was agreed by all that he should be the one to do the surgery even if it meant holding her off for a few days as Dr. Chen has a history with Kya and knows what he is up against with the brown bear. He also mentioned to me that at his conference he spoke about Kya’s case and some of her issues. He then mentioned that from the time he spoke about her case up til this morning, he had received over 6,000 emails from various doctors with input, questions, advice etc. He said that Kya is being well discussed which really eased a lot of my anxiety. It was like God used that to show me how many people He has working on the case of this little princess and reminded me that we are not alone in all of this. However, it also reminded me of just how difficult Kya’s heart complications really are and how this battle is nowhere near from being resolved. The truth is this, Kya will always be a heart baby and we will always have to monitor her care and be sure we know how to take care of her. She has a very complex heart. It’s almost like she has things in her heart she does not need and then does not have things in her heart that she does need. So with all that in mind, Dr. Chen again explained to me that Kya’s aortic arch definitely needed to be repaired. This little collapse in her arch happened after the first surgery and kind of surprised all the doctors as it was not what they expected to happen. Then Dr. Chen told me that he was again going to attempt to resolve some of the issues in her aortic valve (I think I have that right?). Our talk about this on Thursday night led him to believe that Kya would need that valve completely replaced. Whereas it is good to know that things like that are an option, it’s not the best option and it was one Dr. Chen was hoping to avoid. Well, after his conference and 6,000 emails, he came to the conclusion that he could tinker with it a bit more and simply do enough repairs on it to help it work as best as it can in the hopes of not having to replace it. I was glad to hear he was a little more confident in this area. I also found out from a nurse that just a couple of years ago, Seattle Children’s did not even do valve repairs until Dr. Chen arrived because he is that skilled in them, they only did replacements and with less than good results.
What are the odds of us being stationed in WA where we would eventually adopt a heart baby who would be looked after by one of the best valve repair doctors in the US? Good thing I don’t believe in chance. That bit of information completely overwhelmed me and again, I was so thankful for the little things God is showing to me in all of this. So many little things to be thankful for in all of this.
So after a long round with the anesthesiologist, Kya was taken on the long walk down the hall with her little entourage. It takes about 6 medical people to transport this little gal. I need a team like that on a daily basis at home. I kissed brown bear on the one part of her head that did not have tape or goo on it and off she went.
In the meantime…
Oh the suspense, it’s killing me. I will fill you in on the rest later or you can do like I do and read the last chapter to find out the end. If you’re still here with me, I will tell you my in the meantime funny for the day. As most of you know, I have been having issues with my phone. As of Monday, I am now the owner of an iPhone and once Jana showed me how to flip on the sound switch, I felt like I was transported into a new century. But one thing I did learn with this so called “smart phone” is that the phone does not make the user. My phrase is this…smart phone=dumb user and I proved my own phrase true. I was attempting to add some numbers to my contacts list and added what I thought was my friend Jana’s phone number. Jana had decided she would come sit with me while at the hospital so I wanted to get her number in before I got down to the hospital. So Monday night I sent of a test text to “Jana” and thought she was a bit out of humor in her response. The conversation went something like this.
Me: This is my test text from my awesome new iphone.
“Jana”: who are you and how do I know you?
Me: I know you because I follow you on facebook and twitter. I read your blog when you are not looking. I come to your house and cook strange food.
“Jana”: no response
At this point I was thinking, OK, Jana must be busy. So I waited to text her again from my amazing new phone once I arrived at the hospital.
Me: I am at hospital and Kya is doing well and looks good.
“Jana”: This is Steve in Utah, you may want to check your numbers!!!!!
Yup, poor Steve in Utah was fed up with my sending texts to him trying to convince him he was in fact my friend Jana. What a difference one little number makes in order to get that whole smart phone thing right. I quickly deleted Steve from my contact list and hope he is recovered from the incident.
After a very long morning dragged into a long afternoon, Dr. Chen emerged from the OR with a good report. He had been able to fix Kya’s arch and did a lot of repair work to her valve instead of replacing it. We are not fully in the clear with the valve but Dr. Chen hopes that with the other repairs he has done and will do to Kya’s heart, the valve will take care of itself. Kya came out of the surgery without having to be on ECMO, a huge praise, and did not bleed out on the table this time. Dr. Chen said they were better prepared for all the little curve balls Kya likes to thrown their way since they had already dealt with her. That is why having Dr. Chen back as her surgeon was exactly what Kya needed. Kya came out with a couple extra chest drain tubes, chest open but not too far, a few more IV lines, and a clean out nose respirator tube which actually helped her O2 levels rise a little. Right now, she is completely out and will remain so for the next couple of days which still puts her at risk for neurological damage. Dr. Chen hopes the swelling in Kya’s chest cavity will come down quick enough to have her chest closed as early as Thursday. That would be so awesome because then it is just a matter of weaning her off meds and the breathing machine and then she can come down to the recovery floor.
For the first time in all of this, I felt like I could begin to see the end of the tunnel. We still have a long road ahead and are hoping for no setbacks. Carlton, the boys, and I are so ready for our little bear to come home and be part of the crazy Keen routine again. The atmosphere in the little ICU room is so much different this time than last time. Not nearly as many loud machines, the lights are dim, the nurses have Kya all hooked up to everything she needs to be hooked up to and so they are chatting and laughing in the hallway right now instead of screaming over the machines and talking with intensity. It is actually very peaceful right now which is why I am taking the time to send an update.
I am including a cute pic of Kya that was taken a few days before her first surgery. At the time, I could not figure out what in the world she was doing, now I think she may have had a better understanding than I thought of what she could expect while in the hospital again. Tubes up the nose.
I am also going to attempt to fwd two videos of Kya eating, one from when we were still in China and one from just a few days before surgery. I apologize that the second one’s sound quality is not good as her brothers were playing legos in the background and there is even a little bit of nudity in that video so parents, please be sure to not laugh as you know the same things probably happen in your home.
On the side note of eating, I had to laugh when Kya was weighed the other day and after being on her feeding tube of high calorie feeds to please the nutritionist here, Kya has in fact gained 0 pounds but has shot out 2 more inches. I think her little body just wants to catch up in length first before it starts gaining weight. I just had to laugh as the nutritionist is determined to fatten up Kya and is not succeeding. I may have to check and see if she knows that Kya is undernourished and blame her for it 😉
Enjoy the pics.
**Instead of video, I included a collage of pics from video. Two too pics are from China, bottom are from after her first tummy surgery…when she could finally eat!!! Isn’t it amazing what good medical help, nutrition & love can do! I remember holding her in China when she was only 12 small/frail pounds!
**quick note: for those of you wanting to send Tracy a note of encouragement, you may email me & I can forward her your messages. She loves getting emails/distractions while waiting.
Thank you all for caring/praying!!!