"Once our eyes are opened, we cannot pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." Proverbs 24:12



“There are no strangers here; Only friends you haven’t yet met.”- William Butler Yeats





Tuesday, March 24, 2009

Kai! Kai! Kai!

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My little man a couple weeks before getting sick.

It seems like my posts for the past few weeks have been all doom and gloom and mostly all about Kai. I so wish I could pretend that I'm not feeling the way I really am. I wish that I could use the blog as my fantasy world and write about all the joy and cute things my kiddos do daily without ever having to write anything sad or worrisome. But alas, I know that would not be real and keepin' it real is important to me.

I love looking back and reading about where we were many months ago. Reading about the struggles we've endured and the goals we've attained. Reading about how God has intervened and shown us that when we walk through the fire, it is then that he carries us and prevents us from being burned.

Kai de-sat'd last night 12 times. I decided to go ahead and send he and Anna Grace to school today. They were both really excited and happy to go. I went inside to update their teacher on all the going-ons only to find out that she's now become an avid Bouquet of Blessings blog reader, so no real update was necessary. (Hi, Mrs. K!)

We visited the pediatrician yesterday and she was astounded about all that's happened from the time she sent us to the hospital two weeks ago. Kai is now on a high calorie diet to try and restore some of the 5+ pounds his already thin, little body has lost in this process. I wish I could trade places with him....heh!

When I arrived home, I called Dr. Hero, (no, that's not really his name, but he's been our hero when it's come to Kai's cleft care from day one) Kai's cleft surgeon up in Orlando. I gave him the recap since we've been home and told him that we are now on 2 days of de-sat'ing into the low 80's. He definitely helped me put things a bit into perspective.

Prior to his surgery, according to the sleep study, Kai de-sat'd 384 times the night of the sleep study. THREE HUNDRED AND EIGHT-FOUR TIMES going down to a low of 71 that night. So, as Dr. Hero pointed out, de-sat'ing 12 times in one night is a vast improvement. Are we at our goal? Absolutely. Not. But, we are only 9 days post-op. Swelling could last for weeks. One of the things I love about this doctor, as opposed to Dr. Ego, is that he is very conservative when it comes to surgery. (Either that or he really doesn't mind this crazy, Cuban Mama calling him at least once a day asking him for advice.) I know he will not take Kai into the operating room unless he feels it will be beneficial to Kai.

I faxed over the results of Kai's sleep study to him and he will be contacting the Director of the sleep clinic here in Ft. Myers, who just happens to be a personal friend of his, for his opinion on Kai's situation. He said the options would be to:

a) Have another sleep study done now to see if there's been marked improvement and if there still seems to be apnea-tic episodes. But, if there is still swelling, it wouldn't reflect true results.

b) Go up to Orlando and have another endoscopy (poor Kai!) done by Dr. Hero's ENT to see if they see further obstructions, now that the adenoids have been removed. Then act accordingly.

c) Wait it out. Continue to monitor him keeping records of drops in saturation. Allow the swelling to reduce and see if the saturation levels rise over the next month. (He said if it was his child, this would be his choice.)

I did ask him point blank if the de-sat's into the 80's, for a few seconds at a time, could have long-term effects. He answer was, "In my opinion, the answer would be no. But that said, I am not a sleep specialist and would feel 100% more comfortable if we got that answer from someone who was." So, right now, that's where we're at. Waiting for the answer to that question.

Do I feel better? Right now? Yes. But, when I watch my child laying there while I hear alarms sounding in the background and knowing that maybe he is struggling to breathe or that I am actually sitting by watching something happen that is potentially harmful to his health, that terrifies me.

I know God remains in total control of this situation. I know that He is well aware of the outcome and knows the answers to the many questions that fill my mind daily. I also know that He is allowing this to happen for a greater good. I believe that. I really do. I know that He's strengthening my faith through this trial and I am trying hard to let go and let His will be done. As always, I continue to give him the glory for all that has occurred, hard as it may be at times.

Do you remember THIS post? I went back and read it today. Again, I had to laugh. My first thought is that YOU GUYS ARE SOME MIGHTY PRAYER WARRIORS! I gotta be careful what I ask for.

Do you recall when I was asking you to please pray for God to intervene because we needed to come up with $3,000. for Kai's ear tube surgery? Well, guess what? God intervened. BIG TIME! Kai got his ear tubes! He also had his adenoids removed and a helicopter ride to boot! We're probably approaching the $200,000. mark on medical bills for these past couple of weeks, but I say this with my entire heart and soul, this is the ONLY issue that I am 100% at peace with. Kai got his tubes! He's being taken care of and as many of you have said and reminded me of, God will provide. He has. He does. And He always will. I know the reason why I have that peace. It is the fruit of your prayers.

Therefore, I am still asking. Will you please continue to pray for our little man's complete healing?

Both Scott and I truly want to say thank you to each and every one of you for all your prayers, your support, your love, your actions and most of all, for allowing the Jesus in you to shine through like beacons in the night. Many times you have been that lighthouse when we've felt like we're drifting out at sea. Thank you!

Heavenly Father,

I come to you today in complete thanksgiving, Lord. I again thank you Lord for choosing me to be Kai's earthly mother. I thank you Father for showing me through others, people I have never met in person, that you are alive and living in their hearts. You've shown me that we are one body in Your Blessed Name.

Father God, I thank you for the gift of your precious son. It is through Him and He alone that I am able to be there for my son. Your word tells us that it is when we are weak that we are strong, through our Savior, your son. I thank you for that strength, especially during times when I thought I couldn't go further.

Lord, I lift up Kai to you and ask that your will be done. I raise Him into your arms Father, and ask for complete healing of his little body. You are the Great Physician. You are the alpha and the omega, the beginning and the end. I entrust our little boy into your care above all physicians, Lord. May the outcome of these trials and struggles glorify you, his creator. May you fill the doctors whom you have given this gift of knowledge to, with the wisdom that they need to treat him properly.

Thank you Lord Jesus for being in my life. For being my rock.

In your precious name I pray.

Amen.

20 comments :

Ruth said...

I am glad you were able to talk to the doc and get some reassurance. I dreamed last night that I was there to spell you so you could get some good sleep. Take care of yourself so you can stay strong!
Praying for total and complete healing!

Jill said...

Thanks for the update. This Dr. Hero truly is a wonderful doctor. I am grateful he is available to you and wish there were more like him! He knows you want what is best for your child.

We will most certainly keep Kai in our prayers...so many things to consider...God will show you what to do...

I also will pray that things will settle down and you can have some "boring", and "down" days VERY soon!
Love!
Jill

Mom Of Many said...

O,
I have been praying for Kai. I appreciate your honesty. I can totally understand the desire to have cheery posts, etc., but really, we want "life" more than anything. If anyone is living in a fairy tale then they probably aren't really worth reading, don't you think?

This fire season for us has been one filled with much grief, sadness and pain. I can't be anything but honest, just like you.

Know that your true friends want to hear from you - the good, the bad and the ugly and that we continue to pray!

Much love from Colorado, Linny

Sammy said...

Well even if you're a little down or just tired I love your new cheery spring blog!

Charlliesweb said...

Ohilda! Sit down and write the hospital a letter, explain your current finances, the downfalls of your current insurance and the number of members in your household. We did this with Kaylee's cleft repair, were given a financial assistance application and had her bill cut down from well over $3,000 to $600, for which they took payments on for the next year and a half with no phone calls, no bugging letters, nothing! And that was Vanderbilt Children's Hospital. Please try this :)

He And Me + 3 said...

Love the picture. So cute...what a smile. I will be praying for complete healing.

Sherri said...

Ohilda,

What I like about you is that you keep it real. The joy in your life is evident as you blog about the hard times.

My children want to become a part of your family after viewing the videos you posted. Just this morning, Olivia shouted, "it's Shu-Shu time!" then started doing the dance. It was hysterical. And my Sarah (21) loves your mom and the song she sang. So, one of these days, the Busk kids just may show up on your doorstep. You never know.

Cyndi said...

Ohilda - Thanks for keeping it real and not sugar-coating it. My heart goes out to you....every morning I have been waking up on my side of the world, wondering if the alarms are going off in the darkness on your side of the world. I know you can't be getting much sleep through all of this, which can't help. I so wish I could do something...anything to help at this point. I am glad that you have a Dr. Hero to bounce ideas off of...and that he isn't just talking at you as if Kai is a specimen. I hope you get the answer soon to your questions and God leads you to the right choice for you and for Kai. You are certainly in my prayers....always.

Jennifer said...

Praising God for the gift of perspective He's provided with Dr. Hero (and I love that blog name!) Will continue praying for Kai and for you. Let me know if there's anything I can do!

Patricia/NYC said...

Praying here for complete healing for Kai & for all of your health & spiritual well being!!

The Ferrill's said...

Ohilda I am continuing to pray for complete healing!!!!!!!! You bless us so much, it is a PRIVILEGE to pray for your family! Thank you for sharing your life with us!!!!!!!
LOVE YOU!!!!!!!!!

Peg said...

My dear, dear friend,
I am praying as always. You all have come so far. Remember that tiny underweight boy with rope burns on his hips. Look at him now!!! Our Blessed Mother is looking over him, as is our awesome God--he will be a leader of all good things-his life has blessed so many!!!!

Tami said...

I would put my trust in the advice you're getting from Dr Hero....sounds like a wonderful, caring, level headed, realistic doctor. What a blessing. Glad Kai is improving....keeping you all in prayer.

Holly said...

I love how you lay it down Ohilda.
I know how medical bills can pile up. I really do. What an opportunity to see how Jehovah Jireh PROVIDES!
and to answer your question...YES...I will continue to pray and watch while God works.
Hugs,
Holly

Michelle said...

Dr. Hero sounds wonderful. I am keeping Kai in my prayers!

Hugs to you, my friend!
Michelle

mommy24treasures said...

Ohilda
I too will continue to pray for COMPLETE healing.
Bless you all
Connie

Jewels of My Heart said...

Amen! I will be praying for your sweet Kai. I cannot imagine how hard and frightening it has been for him and for you.... but I have to admit that I have often thought about how God got the ear tubes put in that needed to be put in. His ways are not our ways...... He has a plan... it usually is so much bigger than us, we can't see the big picture. The eternal scheme of things.... But we can rest in the knowledge that God is on the throne. He loves your son even more than you do. He loves you and He is going to get your family through this and yes, He will provide.
God's peace and God's healing.
Love,
Daleea

Aus said...

Morning guys - there is a lot of GREAT advice in these comments - from pragmatic (contact the hosp. about the bills) to the Heavens (some really great prayers in here!) I was going to send you a private e-mail but feel called to post this publically - maybe a reader that needs to hear this?

You have gotten to 'know' us - so please let me be completely frank with you because Dr. Hero's comments are right on - Kai is MUCH improved from where he was. And I would hope that you know us well enough to know that there is no animosity of any kind here - and I don't feel that this is written for you so much as someone else out there....I swear there must have been something in one of these comments that has triggered these thoughts in my mind...and I usually just don't feel this way....

So here's the question - and as a dad it's the hardest thing in the world to think about -

If the Lord wanted to call Kai home - do you really think that any of this would have made a difference?

Good answer - so - now that we have established that Kai is going to be staying with you (us - I kinda feel like an 'uncle' and am having a little trouble understanding that too!), then while we can 'ponder the reasons why' until forever, we'll never really know. So let's just add that question to the list of things we have to discuss with the Father during the fullness of time and get back to the business of feeling better (both Kai and you guys!!)

It sounds to me like he is really doing great - this from someone who - as an adult - had a more radical surgery for sleep apnea, and still sleeps with a CPAP today. The surgery was miserable, and I had swelling and a weird voice for several weeks afterward - couldn't start using the CPAP until much later - he's doing super!!

So please - both you and Scott feel re-assured that you are doing the absolute best for Kai and the rest of the family - ya'll really are top shelf!

hugs and loads of them!! (And thanks for letting me use your blog to speak to someone!)

aus and co.

waiting4Isabella said...

TODAY'S SCRIPTURE

“Fear not [there is nothing to fear], for I am with you…I will help you; yes, I will hold you up and retain you with My [victorious] right hand…”
(Isaiah 41:10, AMP)


TODAY'S WORD from Joel and Victoria
Is there something in your life that feels beyond your control? If you’re tempted to get discouraged, remember, as a believer, God is holding you in the palm of His hand. There is nothing too difficult, nothing too impossible, nothing beyond His ability. When God holds you in His hand, you are safe. You are cared for. In His hand, there is victory. In His hand, there is strength. In His hand, there is provision. In His hand is everything you need.

No matter what you may be going through today, you can trust that God is for you. Instead of getting down and depressed over your circumstances, look up and get a vision of God turning that situation around. Get a vision of His favor, promotion, and increase in your life. As you stand in faith, you’ll see those supernatural breaks that will launch you further ahead than you ever thought possible! Remember, He holds you in His victorious right hand!


A PRAYER FOR TODAY

Father in heaven, thank You for helping me and holding me in Your victorious right hand. I choose to trust You even when things don’t make sense, even when things seem beyond my control. I release my cares to You knowing that You work all things together for my good. In Jesus’ Name. Amen.

The Byrd's Nest said...

We continue to pray for Kai here at the Byrd's Nest and that everyone gets some sleep soon!

P.S. I personally like "real" blogs where people share their real feelings and sugarcoat everything...you know I don't sugarcoat girlfriend! Love you and hug yourself for me today!

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