"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





Wednesday, March 18, 2009

The Best and The Worst

I apologize for writing this update so late, but I've been trying to think about the words I need to type in order to get this done. The ENT came in and we discussed the fact that Kai had de-saturated as low as 72 the previous night. Here's our options: First of all, Kai needs to have TWO good nights of steady high saturation levels (90's) in order to be discharged to go home without further problems. This is worrisome to the ENT. We decided to do the following:

Plan A - The Best Scenario) If he sleeps for two nights, no problems with dips in saturation, he will be discharged on Friday to go home with a monitor that will track his levels. If we notice his levels are lower than what should be, he can be either put on a CPAP machine (which we tried in the ICU in Ft. Myers and he HATED!) for approximately two months to see if is levels have normalized or we can take him to Orlando to see his cleft surgeon and discuss the alternatives there.

Plan B - The Worst Scenario) If he does horrible for the next two nights (Jesus...please don't let this be the option!), we will then go from this hospital directly (probably another airlift since they don't want him traveling by car/ambulance in respiratory distress) to Arnold Palmer Hospital in Orlando directly, without going home. There he will be seen by his surgeon and a new team of ENTs.

Plan C - God's Miracle) That he have two great nights and go home without every having any apnea issues again!

Neither option A nor B sounded to me like it was a "Everything is great. You're discharged. Have a nice life" kind of answer. So, I'll have to keep believing that my God is bigger than any predictions any human man can make. I'm praying for Plan C.

I think I've covered every emotion possible today, from watching him sitting on the bed playing with playdough and my heart breaking to anger at why this is even happening. I have felt guilt because this may have all started with his catching bronchitis. Should I have been more vigilant in making sure he didn't catch anything? AJ was sick prior to him. Should I have separated them? There are so many should've, would've, could've that I'd go nuts thinking about them.

It's now midnight and Kai had fallen asleep finally out of pure exhaustion around 10:15. I kept vigil over the monitor and prayed with each time the numbers changed. They all remained in the 90's (PRAISE GOD!!!!) but then they came to wake him to give him meds through his IV and that was it. Again, all hell broke loose.

He had been complaining that his IV (his 3rd one here) was hurting. Sure enough, it was leaking. They called the IV team and it took them three tries to get it in. Poor baby screamed and looked at me with those big, beautiful eyes waiting for me to stop them. It kills me. It really rips my heart open to see him waiting for me to protect him, and I can't. I tried reasoning with him and then his little Chinese temper (the one that I know will get him very far in life) flared up and he yelled, "I no talk to you!" I continued to stroke his back as we both cried. My poor baby.

Oh, Kai-Kai. Although I tell you, I wish you really knew that I would trade places with you in a nano-second if I could little man. Every needle that goes into your tender skin, I feel in the deepest parts of my heart. I love you so very much and would do anything to take this away from you. You are such a brave little guy. Your Mama will be laying right by your side again tonight, praying in your ear that God's mercy rain upon you and this nightmare finally end. May you have sweet dreams, sweetie. Sweet dreams without having to gasp for air. I LOVE YOU FOREVER AND EVER AND EVER!

17 comments :

Leslie Jackson said...

I sit here crying as I read this. I know God is able to do anything. Sometimes He just....He just!

Have a great night Kai! You're a strong little guy!

Starla said...

Ohilda,
Just want you to know that I am praying for you and for Kai tonight. God will give you the strength to make it through. Pray for me on the other side of the country as I take care of my 4 grandkids, and for their mom who is not doing well. God will get us both through. Starla

day by day said...

Oh, Ohilda...I so wish I had just the right words to make you feel better.

Please know I am here praying for you. I think that you are such a wonderful Mommy and you are doing a great job staying right by Kai's side and loving him through this. God is right there loving you both through this.

love you!

Waitingfaithfully said...

Praying along with you for Plan C! He is Able!

May the God of all comfort hold you closely through the night. May He keep your little Kai tucked under His mighty wing . . . and give him breath, without struggles.

Love you friend, you're doing great, keep looking up!

Tina

Cyndi said...

I am sitting here with tears streaming down my face....only able to imagine the heartache this experience is causing you right now. I know that as I type this it is the wee hours of the morning for you and I am praying that Kai is doing well with his O2 sat levels. I so wish I could be there to help you in some way. I am sending you a huge hug and hoping that the rest of the night goes well. If Kai needs some cheering up, check out my blog and you'll see some video of Lily dancing to "Mambo #5"....it will make the saddest person smile. :o) He may enjoy it. Praying for outcome C....

Carmen said...

I know it is easier said that done when your baby is suffering but meditate on God's promises.
Joshua 1:9
Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.

Praying

He And Me + 3 said...

Crying over here...Thank you for all the updates. Praying for a miracle.

Aus said...

OK - you want option 3, then option 3 it is....hey - are You lisening? Faithful servant needs one here so get in the game OK? (I find that sometimes a little chiding does the trick - He trashed a temple right?)

CPAP's aren't so bad - if you want to talk about them tickle my digits (I'm talking to school students 9-1 EDT today but other is OK) it's 'dealwithable'!

hugs - prayers - and Kai just hang tough a little longer! (and he really does understand, just can tell you that right now - like so many of us the understanding only comes in time!)

aus and co.

Jill said...

I check often for updates Ohilda! I find myself thinking of you often through the day and with each thought goes UP a PRAYER to the GREAT PHYSICIAN!
I pray for EACH OF YOU!! ALL OF YOU!
Easy for ME to say...but do not be discouraged...you are doing what God needs you to do right now. Kai knows his Mama would willingly take his pain for him!
Love and MANY blessings.
Jill

sara said...

dear friend, I am praying God's best for Kai. As I am learning in my own life, God's best is not always what we think we need, but is ALWAYS for our best and brings Him the most glory.

I do smile when I think of all the people you have touched with your faith in that hospital!

Hang strong to Him. he is El Roi and he sees every detail of your situation!!

Love you!

The Ferrill's said...

I'm praying for that miracle too, Ohilda! Your life of faith is a testimony to so many...and even though at times you might feel like you have little faith...all it takes is that mustard seed faith!!!!!!!!!! God will take care of the rest, He will move those mountains, He will carry your family THROUGH!!!!!!!!
Sending you big hugs and praying for your family, especially little Kai...
You are such a wonderful mother, Ohilda!

Peg said...

Praying for "C" ....and you as always. You are living Mary's life in the Passion, Ohilda--watching your son suffer is the pain beyond all pains.Thinking of you every waking hour.
Love and hugs
Peg

Amy said...

Ohilda, I am so sorry to read this. Oh your baby boy (and you!) has been through the wringer! Praying for #3...big BIG prayers for comfort and endurance and Mercy! I will have my cell with me all day if you could use an ear or a long-distance shoulder. I'm here.

Much Love and Big Hugs...

RamblingMother said...

Praying for you and crying with you. Very hard to see your baby struggle and don't blame yourself. God can and will fix this one way or another.

brocton14 said...

Ohilda,
Praying you guys had a good night. I don't really know what to say at this point but for sure NONE of this is your fault. Kai would have gotten sick at some point unless you put him in a bubble. It may have been a blessing because without the bronchitis it may have taken something worse to let you know about his sleep apnea. Sleep apnea is dangerous in adults and children as you've found out. Praying for the best outcomes for you. Kai is young for you guys to have to use a CPAP machine (BTW they do make colored machines for kids, like that would help but just thought you'd want to know). Praying for you guys!!!
Patty

Holly said...

When my heart was the most broken my 14 year old son said these words to me,"
Mom, we are not skilled to understand what God has willed what God has planned, we only know at His right hand..stands One Who is our Savior. We take Him at His word and deed. Christ died to save me this I read...and in my heart I find a need of Him to be my Savior.
That He would leave His place on high...and come for sinful man to die. You find it strange so once did I...until I knew my Savior!
My Savior loves my Savior lives, my Savior's always there for me. My God He was, my God He is my God is ALWAYS gonna be..."
So we will rest in His goodness and His mighty plans for your little warrior.
Prayers for your migranes too,
love,
Holly

Jewels of My Heart said...

Oh, I am so sorry......... I cannot imagine how hard this is for you all.... I thank God that he IS GOING TO BE OK! I am praying for God's will and am hoping that it is scenario C and God gets all the glory! Although no matter which one it is I hope He does get all the glory because He is oh, so worthy.
God's healing and God's peace sweet friend.
Love,
Daleea

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