I can't tell you all how moved I am when I leave my computer for hours at a time and come back to read your comments and emails. Not just with the picture decision, but I don't think there's been a time that I've ever come on here and asked for prayers or rejoiced in a life event or even just fooled around on here with some of my silliness that you haven't been awesome and shared in it with me, even the shy ones that don't comment publicly but send me emails. You guys completely ROCK! I swear if I had the big bucks, I'd be giving a big 'ole Let's-Get-Together-To-Hangout-And-Praise-Our-God party with my bloggy friends.
I know that it'll be impossible for me to meet all of you in this lifetime, but man, oh man....I sure hope the Big Guy upstairs allows me that privilege when I get there. And just think, I'll even have a great big mansion that He made himself so we could really party!!!!! Yeah, baby!
Can you tell I'm feeling a bit better? Yep. God's in control. I've moved outta the driver's seat.
Now....the nitty-gritty stuff.
First, did you happen to notice the adorable little button on the left side panel of my blog? Yeah, the really cute one with the little girl and boy kneeling down praying? That was my very sweet friend Ame. She posted it on her blog with a link over here asking for prayers for us. I tell ya, I am so very blessed. Thank you, Ame. I love you, girl! (And if ya'll could please say a quick prayer for her too. She's going through some stuff and needs lifting up! God knows exactly what she needs so that's all we have to ask for. - THANK YOU!!)
So, I decided that I would drag that gorgeous little button over to my blog and ask any of you, if you feel moved to do so and you are praying for our family, to please request prayers, (especially for Kai who will be going back into surgery next week and of course, Anna Grace, who will be left behind....again) from those that visit your own blogs by poppin' it on your own sidebar. You know how strongly I feel about the power of prayer and I know God listens, because he's carried us through some really rough times lately. But maybe you can prayerfully consider spreading the word? All you have to do is grab the html code under the picture and slap it onto your layout page! Thank you!!
Before I commence on the big Kai details, I just want to say that PICTURE "B" won by an overwhelming amount... 36 to 15! You guys sure made it clear that out of both pictures, PICTURE "B" should be the one hangin' on the Dr. Hero's wall. By the way, yes that is Dr. Hero. The picture you all chose was taken when Kai was just 29 months old. He had been home for 3 months. It was taken the day after his palate closure here in Ft. Myers and Dr. Hero had taken him for a little walk down the hallways of the hospital. PICTURE "A" was taken just prior to having his VP flap in Orlando in 2007.
Scott and I discussed last week about doing something special for Dr. Hero since we knew we'd be seeing him soon. We decided an appreciation plaque would be appropriate. We are really happy with how it turned out (only seen proofs though) and it will be delivered by Monday, just in time for us to wrap it up and take it with us to Orlando. I needed to give them the final picture this morning, hence the rush for the decision. (I pray that Dr. Hero never comes across our blog. heh!)
One of the many reasons we were moved to even doing the plaque was because this man has literally been at our beck and call since this entire ordeal started almost 6 weeks ago, without charging us one cent. He has not been involved in any of Kai's medical care thus far during this, but has taken the time to call almost daily to check in on Kai's de-sats and was invaluable in guiding us when he was first admitted and later airlifted. So much so, that the doctors in the ICU in Fort Myers called him at 3:30 a.m. when Kai was pretty critical and they did not know what to do, so that he could help them out. He did. Without hesitation. Dr. Hero's heart is without a doubt huge. That was very evident to us from the very first time we met him and learned that he and his gracious wife are the proud parents to 3 adopted Guatemalan beauties. He has a huge heart for orphans and has traveled internationally donating his time and services to repair cleft lips and palates. And he loves our Kai! :)
We are now almost 2 weeks into being home and Kai's de-sat numbers have gone from being 10-15 a night, closer now to 18-25 a night. The length of time he now pauses without breathing during each de-sat have also increased. They have gone from 2-5 seconds, to more serious apneatic episodes of 10-15 seconds of no breathing. This is life threatening and if not treated soon will eventually cause his little heart to fail and his lungs will collapse.
THE GAME PLAN
Dr. Hero wants us arriving in Orlando to admit Kai on Wednesday, the 8th, in the morning. After some nudging from Po-Po that Kai is so deserving of a little fun before heading into another surgery, we have prayerfully decided that I will be leaving at 6 a.m. on Tuesday morning instead and spending a Mama and Kai day at Sea World with him. He loves animals, the ocean and sharks! I think he'll have a ball and I know that I will too, just watching his little face light up. Poor baby has been through so much in the past 6 weeks that just thinking about it, especially having to put those IV's in again, make my heart shrivel and the tears flow. There are few people that he's not shared his "ouchies" with as he pulls out both little arms to show them them bruises brought on by failed IV attempts. He continues to lose weight and is now about 6 lbs. of weight loss since this started 6 weeks ago.
Sadly, Scott will not be going up with us. I will absolutely be missing my best friend being by my side. He began a new job last year and as great as his bosses have been, we cannot risk him losing his job, not to mention the fact that we cannot afford any more unpaid leave. So, unless God forbid, there is an emergency, he will be home.
Po-Po and Ayi will again provide the entertainment for the week for Anna Grace and AJ. Please remember to keep Anna Grace in your prayers. I have been telling her daily about Kai having to go back to the hospital and Mama needing to go with him, but I know it's hard for her to understand. AJ is our little trooper and he just goes with the flow. Thank you, Jesus!
A few of you have asked if Anna Grace could go with me. Unfortunately, she cannot. I will be getting a room at the adjacent Ronald McDonald house like we did last time, but she cannot go into the ICU rooms where Kai will be staying. And if you've read any of the times my babies have gone into the hospital, I have never left them alone. I do have a couple of friends that live in the Orlando area and I am hoping that they may be able to come and stay with Kai for a couple of hours so I can grab maybe an hour of sleep and a quick shower at the RM House. I know the nurses are great and on top of things, but I just could not even fathom leaving Kai alone without someone by his side, especially with him being so traumatized about hospitals now.
Going back to the admission. He will be admitted on Wednesday (without complications our stay should be approximately 5 days) so that they could monitor him and view for themselves his de-sat patterns. On Thursday at 1:30 p.m., he will be taken to the OR to have a Laryngoscopy and a Bronchoscopy done. Depending on the results, he will either have a repeat adenoidectomy, a modification of his flap, or his flap will be completely taken down. He is now at a higher risk with general anesthesia because of the fact that a) he was under G.A. less than a month ago. b) he continues to de-sat and c) he still has something obstructing his airway. Please...please....please pray that the surgery is 100% succesful, that they fully and completely remove whatever obstruction is impeding his breathing and that it does not damage his ability to speak. He has come such a long way. The boy is truly my hero.
I know this is a lot of info in one post to take in and I am hoping you're still awake since I left the most important facts for last, but I wanted to make sure I covered as much as possible.
By the way, I will of course be taking my laptop with me and look forward to proclaiming God's goodness as we rejoice in Kai's complete healing!!! (And I'm sure some really cute pictures from Sea World!) I look forward to spending some happy, pain-free, one-on-one time with my little man.
Thank you again and God bless,