It 'just happens' to be that God gets the glory

Have you ever had a miracle occur in your life? A real, true-life miracle? You know the kind, the ones that you know could only come from God. I am blessed to say I've had a few. Today, He revealed Himself in a big way. Front and center.

Today's post was intended to be about Kai and an update to his medical situation, but it's not.

Really. It's much bigger than that.

It's about God's immense faithfulness when His broken children fall apart and land at His feet.

I do know that this post will end up being a bit long because of all the detail, and I apologize for that in advance. I intentionally enter every detail I can remember, not only to show how God deserves every ounce of the glory, but I also do so for myself. During tough times when I find myself wondering where He is in my life because I don't feel His presence, I go back and read these blog posts and it immediately brings me back to Him, to the Truth.

I hope you do end up reading all the way through to the end. My prayer is that as you see how God revealed His glory to me, He will do the same in your life.

Okay. 'Nuff of the Foreword.

Here's what happened:

Back in June, I took Kai to visit his cleft team. The group ENT (which we don't see with the exception of the yearly cleft team visits) looked at his ears and mumbled something about the tubes being out and that he had possible fluid in both ears. He then sent him to the audiologist for testing. The results were that his ear drums were "flat", meaning fluid and that he had some hearing loss in his right ear. That worried me a lot. Kai has a lot of scar tissue built up inside his ears from four prior tube surgeries. The last thing we wanted to hear was that he needed another set of tubes.

At that visit, I asked for a referral to see an ENT that had been recommended to me in Tampa (about 2.5 hours away). The pediatrician of the team gave me my referral and we were done for the day. A few days later, I set up the appointment with the new doctor. The soonest appointment they could give me was for today, October 27. That meant we had to wait 3 months to get in to see her.

I've been trying so hard to give my control issues to God. I figured He wanted this time for me to pray for Kai, which I of course have been doing.

This morning finally arrived. We headed out of the house shortly before 7:00 a.m. for our 10:00 p.m. appointment. I wanted to give myself plenty of leeway in case of traffic, etc.

I had my Mapquest (yes, I'm one of the few people in the world without a GPS) papers right next to me and all seemed fine when I got off at the exit that would lead me to the office. After about 20 minutes of driving, I realized I was totally lost. It was 9:55. I was very nervous. I pull over, call the doctor's office and tell them. The girl gives me directions and tells me that I need to be there soon because if I am later than 15 minutes, I would need to reschedule, regardless of the fact that I had been driving 3 hrs. to get there. I was about 5 miles away.

Finally, with sweaty palms, I walk into their office at 10:10. I check in and give them all the corresponding paperwork. The girl says to me, "I need the referral, please." I point out to her the doctor's referral that I had just handed to her and she says, "Thank you. Please be seated."

Fifteen minutes later, what seemed like a very harried nurse opens the waiting room door and calls Kai's name. We immediately get up and follow her into a small triage room. She turns to me and abruptly says, "I need the referral papers." I responded with, "I gave them to the girl out front. I believe they are in the file." She quickly flips through the pages of the file she is holding and as soon as I saw it, I said, "There! That's it!". She said, "No. This is the referral from the doctor. What I need is the case authorization from his caseworker at the insurance company." I said, "Why didn't anyone tell me this? I've been waiting for almost 3 months for this appointment." Sounding perturbed she responded with, "We couldn't get a hold of you."

So, I take a deep breath. I then said to her, "This is his caseworker's name and number. Can we call her now and she can get you what you need?" She said, "Yes, I'll try that but we can't see him until I have that, so go back to the waiting room." I then scoot my kiddo out the door again and we sit in the same chairs hard chairs.

Thirty seconds later, she appears again with a scowl look on her face. She said, "I called. The caseworker is on vacation, so we'll have to reschedule." I looked at her and with hesitation said, "Wait. Can we call someone else? Please? I've been waiting for almost 3 months and just drove 3 hours to get here." She said, "I can't call because it's very busy here. I'll give you 15 minutes. If you can't get me the paperwork within that time frame, we will have to reschedule." She turned her back and walked away.

I sat there in disbelief, almost on the verge of tears.

I immediately dial the caseworker's number. Sure enough. Same message. She was out for the week. I left her a voicemail with the hopes that maybe she might call in, by the Grace of God, and get it. I then remembered that her office is in the same office as Kai's pediatrician. I call the pediatrician's office and explained the situation to the receptionist. She reiterated that the caseworker was out of town and unfortunately, she was the only one that could fill out the required paperwork. She then said, "Here is the number for the main office to the insurance company. Call them and see if anyone there can help you."

In the meantime, the clock is ticking.....fast.

I dial the insurance company's number and explain the entire situation to the lady that answered. She puts me on hold and comes back only to tell me that the caseworker is the only person that could assist me because she has Kai's file and she is the only one that knows it.

I was beginning to feel desperate. I ask to speak to a supervisor.

A soft spoken man picks up the phone and almost in a whisper says, "May I help you?" I spent two of my precious minutes explaining again the entire ordeal to him. The harried nurse had already walked by glancing at me and then up at the large clock on the waiting room wall.

The supervisor repeats the identical response that the previous girl had already told me. By then, by bottom lip was quivering and my eyes were welling up. I couldn't believe they weren't going to see Kai. He then explained further that because of his "special needs plan" it is the caseworker's responsibility to follow up, blah...blah...blah. His explanation was followed by asking me why I hadn't called earlier if I had made the appointment 3 months before. At that point, I just repeated, "I didn't know. I didn't know." I thanked him and hung up.

I look at the clock. Six minutes before I'd reach the final countdown. I knew I was going to start bawling, so I quickly glance towards the receptionist and without giving her eye contact said, "I'm going to my car a minute, I'll be right back."

I grab Kai's hand and almost run across the parking lot to my car. Once inside, I fell completely apart. I started wailing to God as I buried my face into my hands. I yelled, "Lord! I don't understand! I've been begging you for months for him to be okay. I thought that's what you wanted from me. I've been praying fervently for my little boy! For him not to need any further surgeries. For him not to have any hearing loss. Why God? Why? Why are you not even allowing him to be seen by the doctor? Why did you drag me here? Lord, please intervene!" I sobbed uncontrollably.

I look at the clock on the console. There were three minutes left.

I had resigned myself to the fact that now I would have to reschedule and probably have to wait another 3 months, especially during the busy holiday season coming up. I sat there for another second, sniffling and trying to regain my composure. I then thought, "I'll try once more. Maybe I can soften this supervisor's heart. After all, he's a supervisor. He should have the authority."

So, I redialed the number. A new girl answered. I tell her I had just spoken to someone regarding my son and ask if it was possible to speak to her again. She told me they have over 50 operators there and it would be impossible to know who I spoke with. She then said, "How can I help you?" I, for the 4th time, explained the entire story, ending with wanting to speak to the supervisor. The woman answers me by saying, "Mrs. Bombardier, I'm sorry, but you apparently just spoke to him 5 minutes ago and he explained why he couldn't....." and then she stopped speaking. There was silence on the other end. Just as quickly as she had stopped, she said, "Hold on a second, please."

I waited for what seemed like an eternity, since I was pretty much out of time. Yet, something inside of me told me not to hang up.

After a minute, she gets back on the phone and says, "Today must be your lucky day!"

I was confused.

She then said, "Donna, your caseworker, just happened to walk in to the office. She apparently left something in her desk before leaving on vacation and she stopped by to pick it up."

I literally yelled, "WHAT?" I knew things don't "just happen". I knew that was God! Even after I doubted him, even after I questioned him, He remained faithful. I suddenly became lost in Him. I almost forgot the woman was still on the line. She said, "Mrs. Bombardier? Would you like to speak to her?" In between praises and sobs, I managed to muster a "Yes, please!"

The caseworker gets on the phone and says, "Hello?" I was already on my way back into the waiting room, oblivious to the smudges of mascara covering my eyes. I was crying and rambling off a-mile-a-minute. Through sobs I said, "Donna, please. I need your help. I'm out of time. They would only give me 15 minutes and I'm out of time."

The poor woman must have thought I was nuts! She said, "Slow down. How can I help you?" I took a deep breath and then said, "I drove 3 hours to get to Tampa to bring my son to see an ENT. I've been waiting 3 months for this appointment and they are telling me to reschedule because I don't have some paper they need from you." She asked, "The case authorization paper?" I said, "Yes!!!" She quickly responded with, "Tell them it will be there in 2 minutes. I'll do it right now. You just happened to catch me here. I'm on vacation this week!"

There were those words again, "just happened".

I thanked her profusely (in between the many thank you's to Jesus) and hung up. I turn to the nurse and staff that had seen this crazy mother go over the edge right before their eyes and said in as calm a manner as I could come up with, "That was the caseworker. The paper will be here in 2 minutes thanks to God!" and I plopped myself in the chair next to my boy who had a bewildered look on his face. I felt like I had defeated Goliath. God had orchestrated it all. Had I not been late, I would not have called when she was walking into the office to pick up something. Had I not attempted to call back and try to soften the supervisor's heart, I would have missed her. Every second of every incident was a piece of the puzzle. He amazes me!

Immediately we were taken back to a room.

In addition, God's faithfulness did not end in just getting us in to see the doctor.

Kai's "hearing loss" was due to a ball of wax the size of a small pea, wrapped around the tube that had already come out. It was pushing against his eardrum, therefore impeding his hearing. She removed it and took him back to have another hearing test done. Both his ear drums were perfect, meaning absolutely no fluid and his hearing was normal. No need for further surgeries!

Furthermore, the final prayer was to see if we could get a diagnosis as to why he can't breathe out of his nose. God answered that one also. We received a diagnosis from a cat scan done 2 weeks ago, which I "just happened" to take to her today. He has a pretty deviated septum, but she said she's definitely seen worse. She doesn't recommend surgery until he finishes growing because bones and facial features change during growth.

We have a sleep study scheduled for next week and if that if the results of that are reasonable, there will be no further surgeries in my sweet boy's future for at least a couple of years until his bone graft is due. At the end of November, we go visit Dr. Hero.

What an awesome, sovereign and merciful God we serve!! The cries of His children never fall on deaf ears. Thank you, Jesus for loving me in a way I will never, ever understand!

breathe...breathe....

As you know, we celebrated my birthday last week by going to the Kai's pulmonologist/sleep doctor.

Back in March when Kai had his first episode of OSA (obstructive sleep apnea) and had his first sleep study, the results were pretty devastating. His RDI or Respiratory Distress Index (basically how many times he stops breathing per hour!) was 74.5. Yes, that night in PICU the average times that he stopped breathing in his sleep was 74.5 times per hour! Many times over 90 seconds and once over 120 seconds.

His Oxygenation Desaturation, de-sats for short, were down to the high 60's. This means that he only had 60+% of the necessary oxygen in his system. A child should never go below 94.

I was anxious to see what his results were this time, to see if the two back-to-back surgeries had been effective and to see if further intervention would be required.

The results weren't what would have made me jump for joy and skip down the halls, but they were much improved.

On July 17, he went back for his second sleep study. His RDI that night was 5.1. This translates to his body ceasing to breathe an average of 5 times per our. Still very scary (especially when the doctor reaffirmed to me that a child under 15 should be less than once an hour, if that) but a vast improvement from the prior sleep study.

His Oxygenation Desaturation only went down below normal levels once. It went down to 89, but it lasted 73 seconds. Over a minute! Still scary, but again, a vast improvement.

It was also noted that all Apnea Hypopnea (apneatic episodes) occured while on his back and throughout the entire night, not just during REM sleep which is when they had anticipated it was occuring.

So, you may be asking where do we go from here?

These were the options:

1) Go back into surgery and take down the flap to remove the final obstruction. (This may greatly affect his speech, since it would now allow air back into the nasal cavity.)

2) Have him sleep with a CPAP (continuous positive airway pressure)machine on. This option was attempted several times while in the hospital and he just couldn't tolerate it without sedation. Basically what it does is it delivers a stream of compressed air via a hose into a mask, splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible. They had me try it at the hospital and it was scary for me. It felt like when you are riding in a car going 60 mph and stick your head out the window. Great for dogs. Not so much for little boys.

3) Being that all of his episodes happen while he is laying on his back, configure a way to keep him on his side or on his tummy and then give him time (maybe anywhere between 1-5 years) for his body and airways to continue growing, thus enlarging the spaces of his airway passages.

The doctor's suggestion to my relief, and what I was hoping, was option # 3. He does have to be monitored by all teams of doctors (cleft, ENT and pulmonologist) every 3 months and needs to have a sleep study done every 6 months to ensure that his organs are not being affected by the interruption in his sleep/breathing cycle. His little heart is very strong and his EKG's have been perfect. Praise God!

So, while not critical, he remains under guarded watch.

It would make this Mama's heart feel good if you could please continue to keep my sweet little man in your prayers and his little airways expand large enough where breathing would no longer be an issue when he sleeps.

Any sign of congestion (as he has now!) could mean another rush to the ER and a possible option # 1. But, I'm not going there! I'm trusting God is in control and my precious treasure has a hedge of protection surrounding him, along with many angels, saints and lots of wonderful prayer warriors lifting him up!

Thank you!

birthday wishes are dreams come true

There's no greater wish I would like than when I take my little man, Kai, to the doctor to review the sleep study result today, for him to say to me, "His results were excellent! NO apneatic epidsodes and NO de-sats!" Oh yes, that would be the greatest birthday gift ever!

Wanna help me make that wish as I blow out the candles (Ahem...a lot more than the five in the picture) today?

he did "GOD-MAZINGLY" well!

I arrived, in PJ's, at the hospital at about 8:00 p.m. (I thought it was kinda silly going out in PJ's!)

While Mama and I waited to be called in, Mama told me that nothing soothes the nerves better than a playroom. She was right!




It started with a little sensor here...




and a little sensor there.




During the scary parts, I'd close my eyes.



Pretty soon, I was all hooked up.

Well, almost all hooked up. They wrapped my head with some blue stuff...



then put some tube I didn't like inside my nose and some more wires on my fingers.




Finally,the man said we could say our prayers and it was time to go to sleep.




Mama was so proud of me! She told me that I was so brave because Jesus and His Mama and angels were there with me. I asked her why and she said because she had asked lots of friends to pray for me to be brave and for everything to be okay.

It worked! Thank you to all of Mama's friends for praying for me. It did the job!

I was really, really a big, brave boy!

Love,

Kai