Last evening we asked for urgent prayer for Eliana & Eli’s orphanage buddy Kya aka: gang leader (her mom says)
We send heartfelt thanks to you all for praying & loving Kya’s family through your messages & concerned responses.
We got a very wonderful/detailed medical update today & are encouraged to hear of Kya’s progress.
Her mom Tracy writes:
“Good morning to all my west coast friends and good afternoon to all my east coast friends. Good day to all of you in the middle. We made it through our first night in ICU and Kya did so well. Considering what this gal has been through, I am so proud of her. Of course, at the present moment, she is neither proud of her mommy or happy with me, but I can’t blame her. As I sit on yet another comfy pull out couch, I am watching a little girl who is hooked up to so many tubes and listening to KLove on my ipod, occasionally I see a little leg start kicking to keep beat with the music. She did get two tubes removed this morning, only 972 more to go 🙂
Since I have not been able to write in a little while, I will make this email the book version. Sorry you Kindle users, I have not worked out an agreement with them to publish my long emails, but who knows. Feel free to pop some popcorn, grab something to drink, sit back and curl up with your favorite Kung Pow Kya updates. Seriously, I really do appreciate all of you who want to hear about her and pray for her.
About a week ago, Kya and I came down to Seattle for our pre op visit. She was all smiles the entire way here until it came to the point where I had to undress her for weight measurement and length. That’s when the fits started, but I can’t blame her. What woman likes to be weighed and have her measurements taken. She bit at me, swung at me, and tried to roll herself right off the bed. But this was actually good because she did all of this for the anastheologist. So the Dr. really did not have to ask what my biggest concern was because she got to watch it first-hand. What I wanted to know was how they were going to knock her out in order to knock her out before they officially knock her out. The funniest part of that visit, and yes there was one, was when the Dr. came in, Kya turned her head to make eye contact with the Dr. The Dr. immediately said, oh boy, I better not look her way, I just got the ol stink eye look. I could not believe it!!!! That has been how I have described Kya’s look of death this whole time and the Dr. immediately saw it and actually called it the “stink eye”. I knew right then that Kya was in good hands.
We moved on to the cardiologist whom Kya likes. Dr. Files is her main cardiologist and Kya even reaches down and lifts up her shirt because she knows, when I see this guy, he always want to put that funny round thing up to my heart. May as well make it easy for him.
Then on to the gastro Dr. He drew a very detailed version of what Kya’s insides look like. I was amazed, no seriously, he is a good artist. The information he gave us at that time answered so many questions. Kya has what are called lactic lesions, basically a lot of scar tissue in her tummy which blocks the exit hole from her tummy down to her small intestines. She also has a malrotation where her insides are slightly turned off to one side. She has a poly spleen which does not work to optimum levels and of course her insides are still swapped. That consultation was invaluable. I made the decision right then that we would take Kya off all milk products as they were just causing her more distress in her tummy and more problems with gas. Well, easier said than done and it is safe to say, Kya had different plans. Let’s just say that out of the many battles Kya has given me, I knew I had to win this one and so like a chain smoker, we quit milk cold turkey. We didn’t have a patch or anything else, we just switched her over to juice and water. Kya went for a whole day refusing her bottle every time until that night, she sucked it down and has been drinking juice and water ever since. Because of this switch, she has been able to keep down more of her puree foods and did not have nearly as much gas. What a relief. Her gastro Dr. had informed me at the pre op that I would need to get her to take clear liquids so that she would not be dehydrated because she would not be able to take any milk before the surgery or for a week after the surgery.
During the pre op visit, Carlton took charge of things on the home front. He and the boys had some fun plans with home school etc. They did school, daddy style, went to the park and came home with only one casualty as daddy ripped his jacket when he jumped off the kiddie swing. What can I say, I love my man.
That night when I came home, I asked daddy, who was a little more tired than usual, how things went and how was dinner. Carlton said things went well and that dinner was great, the boys loved all the potatoes and that Grantham had two. I immediately knew something was not quite right?!?! How did Grantham have two potatoes when I had only bought 4 russet potatoes for baking? Carlton told me that he used the Yukon gold potatoes in the pantry and did just what I said, cooked them for 3 hours on 450. WHAT? I said to use the russet potatoes on the counter and cook them for 3 hours on 350. Oh, said my sweet husband, that would explain why the potatoes were a bit dry and the cooking stone a nice charred black color. I had to laugh. Daddy days are never like mommy days which does not make them wrong, just different. The boys were all alive and safe and apparently even well fed so I could not complain, just laugh.
During the next week and a half, I had one task with Kya, keep her healthy. Sure, no problem. Just show me where I can buy a slighty larger gerbil ball for Kya where she can be germ free but still be able to roll around the house. Kya did real well and she made it all the way to Friday before the surgery when we had to have one more check with the nurse just to be on the safe side. Kya passed the test, only two more days of health to go before the surgery.
The Sunday before the surgery we woke up to a nice blanket of snow. Sunday School had been canceled but church was still on so we decided to make the treck up to Bellingham. Let’s just say that was not one of the better decisions we have made, but it ended up being such a blessing. Some families in the church had invited us over for lunch that afternoon but because the weather was so bad, they had the great idea to bring all the food with them to church. So after the service, we sat around with some great friends and families and enjoyed a wonderful meal. Then we all gathered around to pray for Kya. It was so nice and just what this mothers heart needed.
3 AM AND THE STINK EYE
On Monday morning, I woke up bright eyed and bushy tailed at three in the morning ready to go. Yea right. I struggled to get out of bed and had absolutely no desire to take the little bear down to Children’s. My biggest fear was that I would forget Kya as I had a lot of things to pack so Carlton’s job was to make sure Kya got in the car. We still had a bit of snow so getting out of our little area was interesting, but doable. Kya pretty much glared at me the entire 2 ½ hours. She finally fell asleep 10 minutes before we arrived at the hospital. At that point I was like, well since you were so wide awake the whole trip, maybe you should have drove.
We entered Children’s hospital before they even had all the lights turned on, that was strange. We then went through the check in process which did not sit well with Kya. The minute I had to unzip her jammies so they could put on an id bracelet, she flipped. I was like, oh boy, this is going to be a long day, she flipped out over quite possibly the easiest part of the entire visit, the dreaded piece of paper being strapped to her ankle.
She later calmed down and was even sweet while we were in the pre op room. I changed her out and put her into the gown which of course she had to feel the fabric and check it out to see if it would look good on her. I assured her that she looked fine and we sat for a while listening to music on the ipod and having some sweet moments. I broke down in tears when I was changing her into her gown but had to quickly recover as I could see her little face getting upset because mommy was upset.
The anastheologist came in and gave me some meds, for Kya, not me. He told me to give it to her fast because it does not taste great. Well I stuck it in her mouth and pulled the trigger to which Kya managed to not swallow and we could tell that she was swishing it around in her mouth waiting for the moment mommy would look away so she could go back to her China days and spit. In the end, she gulped it down. I asked the Dr. what this would do to her and he said it would make her feel drunk. So I figured we would find out if Kya is a happy drunk or an angry drunk. I was betting on angry, but was completely surprised as some nurses came into the room and Kya was waving at them like, Hi ladies, come on in and join the party. It was too funny, but Kya quickly sobered up when I had to hand her over to the nurse.
PASSING TIME AND UNTIMELY PAGERS
So began the longest part of the day. Kya was to have her heart cath first. The reason for this is because her heart complications are so extensive, they wanted to look at her heart and get some pics before they just cut into her. They entered in through an artery in her leg. The mark left there is so tiny it is amazing to me. From this they learned so much about her heart and think most of it can be corrected with a couple of future surgeries. So more time in the hospital in the future, but I was glad to know it was not as bad as they had originally thought.
I sat around in the cafeteria and walked around here and there for about two hours. I knew the second I left to go to the car or the restroom my little pager would go off, and I was not disappointed. As I walked through the bathroom doors, off went the pager. So I ran down to meet with the cardiologist surgeon which was so worth it to get a good report.
Onto belly surgery. I had been told that the tummy procedure would take about 2 hours but it could go longer. My friends Keith and Carmen came down and Carmen stayed with me for what turned out to be 4 hours. Once again, as we sat waiting for the pager to go off at any time, we decided to go get some lunch. At least this time, we were able to grab a bite and then off went the pager. We headed down to meet with the gastro surgeon and were surprised to hear my friend Kim in the hallway on her way home from a trip to Arizona. What a nice surprise. We all sat there as Dr. Gow explained what happened and why the surgery took so long. He drew another picture of Kya with a smiley face and two little black dots as eyes. I later went back and corrected her eyes and drew little lines so the picture could be accurate.
Basically, Kya had a lot more scar tissue in her belly area than they originally thought. They sucked out unprocessed food that had been in there for who knows how long, removed scar tissue from the stomach and exit area into the small intestines. She also had scar tissue in her small intestines. The exit hole into her small intestines was slightly larger than the end of a ball point pen. YIKES. That explains a lot as to why she was always so backed up even on her puree diet and why she had such an enlarged belly area. Her tummy was having to work so hard all the time to try and get the food through that it was basically swollen 24/7. Her tummy is now the same size as the rest of her little body and she looks so much more evenly proportioned. Before, she had always looked like she had swallowed a volley ball.
I was then told that Kya was sent off to ICU because she had been under for so long and it had messed up her fluid levels. Maintaining Kya’s fluid levels in her lungs is a delicate process. So up to ICU she went where her levels could be monitored around the clock. About 2 hours later, around 6:30 that evening, I was finally able to see her again. She looked good but tired. I was amazed at the size of her belly. She was of course hooked up to all sorts of bells and whistles. I gently whispered her name a few times and she forced open her eyes. She saw me and what I thought would be a happy reunion turned out to be a fit. She immediately burst into tears and started tearing away at all the things she is hooked to and caused her heart rate to soar and her O2 levels to drop. So reunion time with mommy ended in a dose of sedation to calm her down and some more oxygen. I just want to know when I am gonna get some drugs and oxygen too.
Overall, Kya is doing really well even though she doesn’t think so. It has taken me almost 3 hours to complete this update because of all the interruptions and all the times I have had to answer questions and calm her down the second she hears the automatic hand sanitizer go off signaling that someone has come into the room.
The care here has been great and the Dr.’s and nurses have treated us real well. I did just about loose it when the nutritionist came in and gave me a very hard time for having taken Kya off milk and not having fed her meat and table foods. Instead of arguing with this woman in ICU and disturbing all the precious babies up here, I decided to let it pass and figured I will fight with her later once she actually reads Kya’s chart and finds out that she could not digest table food and milk products. She made me feel like the worst mommy in the world acting like I was somehow starving Kya because she has to eat small amounts several times a day, like an infant. This whole time I have had the gastro Dr. telling me how important it would be to get Kya to drink juice and water because she could not have milk products before or after the surgery. Now I got this lady telling me she wants to start Kya back on the milk products asap to get her calorie count up and start her on solids right away. What she does not know is that the gastro Dr. had just come in prior to her and informed me that Kya would be strictly on IV until after Thursday when they will do a dye scan to make sure all the areas they worked on are not leaking. So please pray that this lady will come around and make sure she is on the same page as the Dr.’s so nobody has to read the headline….mother of malnourished daughter takes out nutritionist in ICU.
The boys and daddy are doing very well and a huge thank you again to those at church who did some freezer meals and the Southards who have invited the Keen boys over to their home for a night of food and fellowship even after a long day at work for both Tad and Sherry. The only slight hurdle we are going to have to jump is the issue of Kya being discharged. Because she had to go in ICU, that will make our hospital stay a bit longer which could cause some overlap with my being down here and Carlton leaving. So please pray God will work out those details and that Kya will not have any major set backs.
Much love to all of you and thank you so much for all the encouraging emails, txts, and calls. Kya has no clue you all are thinking of her so much, but it encourages her mommy which helps me to keep calm and be there for Kya so she is benefitting from it for sure.
I am attaching two pics, one of Kya during our last visit here and one of her now. Check out how much she has changed.”