WHHHAAATTTT?????

Do you remember this guy?

This is Bad Luck Shleprock from the Pebbles and Bamm Bamm Show. Remember how he used to walk around with a little black cloud hanging over his head? Well, I'm definitely not one to believe in "luck". but holy bejeezus....this is nutso.

So, here I am, cautiously optimistic about beginning to pack the bag full of toys and goodies Kai has accumulated during his $100,000 + vacation hospital stay because that's pretty much all we have. My clothes all went back with Scott so I've been wearing the same clothes for 3 days now and showered last 2 days ago. Yes, I must be a pleasure to smell....not! I digress.

Back to packing. As I was joyfully skipping around my little closet (I don't think I mentioned to ya'll that we were moved out of the penthouse suite 2 nights ago) of a room, the general doctor on the floor, one of the ones that needs to sign a discharge order, comes in. He asked about Kai and how he was feeling. Listened to his heart. We discussed the small de-sats last night and then he broke the news. "I'm sorry. We're having problems getting the insurance company to agree to paying for the sat monitor at home for more than 24 hours. We feel a bit uneasy sending him home without one. I spoke to the insurance company myself and they are reviewing it, but I don't know if we'll get an answer today" WHHHAAAAATTT?????? I didn't really yell it at him, but my mind was screaming it.

I then gathered my thoughts and said, "So does this mean that if we don't get an answer today, we are here until Monday at least? Because, as we both know, nothing gets done anymore on weekends." His response was vague. "We'll see. We'll see. Hang in there!"

UGH!!! Can you note the frustration in my voice?

His cleft surgeon had told us not to put all our eggs into a monitor. He said that yes, monitors are good, but they can also be a false sense of security or vise-versa He was right. As Kai was sitting here playing this morning (after the doctor had come by) the monitor alarm went off and it showed he was de-sat'ing down to the low 70's. That would be enough for immediate intervention. Two nurses ran in the room. Kai was on his knees on the bed, pushing Hot Wheels around while saying, "vrrooomm....vrrroooommm!" They said, "I guess he's not in respiratory distress, huh?" Ummm...."NO!!" I asked them to take the monitor off of him since it was blatantly obvious that this one was not working. They agreed.

Now we sit and wait to find out what our weekend plans are.

Lord Jesus,

Please intervene. You know exactly what Kai's levels are. You know exactly if something is wrong and we know with all of our hearts that you are the Great Physician. Father God, we ask for your intervention in this process. We surrender it all to you and place the entire situation in your hands, but most importantly Father, I trust with all my being that you, the creator of this precious child you have blessed us with, love him unconditionally and want the best for him. We raise him up to you and surrender his condition to you, Father. We ask for complete healing so that there is no question whatsover about whether he is still struggling with this issue.

We know Lord that whatever the outcome is, you will be glorified.

We thank you Lord for being in our lives and ask these things in your Holy and precious Name.

Amen.

Let The "Son" Shine!

To say I'm exhausted doesn't even come close to how I'm feeling.

Last night was a good night! Yayyy, God! That doesn't entirely mean that Kai didn't de-sat, he did. But, nothing like the previous night. Poor kiddo fell asleep after the IV fiasco. About an hour into his sleep, his levels went down and the alarm made me jump out of my skin. 83...82....81, then a quick jump back up to 93. About 3 minutes later, same scenario with the exception of the numbers just a tad bit lower. 81...80....79 and again, back up to the 90s. That was it. That was his total de-sat for the night. I must've fallen asleep because when the nurse came in at 5 a.m. for his drops, I looked at the clock and said, "Oh my God! I must've fallen asleep and didn't keep an eye on his de-sats." She said to me, "There was nothing to keep an eye on. He's remained in the 90's all night!" Did I already say, "YAAAYYYY, GOD!!!"?

I kissed his sweaty little head, rolled him over a bit and curled up with him to sleep another 2 hours. When I opened my eyes at 7 a.m., I felt as if a Mack Truck had run my head over. It was throbbing. I sat up and felt a wave of nausea overcome me. I knew immediately that I had a serious migraine. My first thought? "Damn! No pills!" I usually carry them with me, but had sent them home in bag with Scott. A few minutes later, I was told by the nurse that transport was coming up to take Kai for another chest x-ray. I got up and as I was walking to the bathroom, the nausea overtook me. I ran inside and threw up. After washing up, I came out and told Kai I was going to the pantry down the hall. I poured myself a weak cup of coffee, only to throw it all up again as I walked back into the room. This trend continued 4 more times in the time we waited for transport.

There's a pharmacy downstairs that I knew I had to get to, because if I didn't take something soon, I'd be completely out of commission. But, I also knew that Kai is scared witless when it comes to tests, x-rays, blood drawn, etc. I couldn't let him go down to x-ray alone. I knew he'd freak. So, I bit the bullet, carried a little basin with me, just in case, and went down to x-ray.

As soon as we arrived back to the room, I asked the nurse to please keep an eye out for him and I went downstairs to buy some Ibuprofen. I popped 4 of those babies and laid down next to Kai. We watched Nemo (again!) with several intermissions of Kai nudging me when he heard me sleeping, followed by, "MAMA! Watch the movie!"

Otherwise the day was non-eventful. The ENT and pulmonologist both came in and everyone is in agreement that if we have another "good" night, we can be discharged tomorrow, taking a Sat monitor home with us as a keepsake. OK, not really a keepsake, but it certainly will be a reminder of our 12 days in the hospital every night when I plug him into it.

Two incidences worth mentioning.

First: Scott picked up the kids last night from my Mom's house to take them to dinner and then took them back and said prayers with them and tucked them in. It warmed my heart to see them so happy and playing. This little clip was taken by Scott on his cell phone. The beginning of the clip is when AJ fell on the driveway and was asking for a kissy on his boo-boo.

And then, my sweet sister did something that made my boy, Kai, smile from ear to ear. I was going to try to video his response as he watched the clips, but the Internet here is so painfully slow that I'd have to be here for 3 days for it to download. I can tell you that he smiled and laughed and answered each question asked of him. It also made Mama smile BIG. Thank you, Ily for thinking of such a sweet thing to do for my boy (and his Mama).

(Excuse the side-way view - my sister wanted to get Kai's Shu-Shu dancing for him.)

Please remember as you head to bed tonight to say a short prayer specifically asking our Lord to allow Kai's Sats to remain in the high 90's.

Thank you all again for your emails, comments, phone calls and support. You really. really. rock!!!

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!