Old picture....same cute kids!
The little ones are so stinkin' cute this morning. Last night after they went to bed, I gathered all the suitcases and bags out of the garage to start packing today.
At the sight of them this morning, it hit them that we really were going on a trip!
Right now, they are all sporting their backpacks, filled to almost bursting with any and every
piece of junk treasure they could find and are walking around saying to each other, "Hurry! The plane is leaving!" or "Do you have your tickets?" and Anna Gracie even picked up her play phone and called Alex. He apparently was "not there" so she left him a message. The message? "Alex, we gonah leeve soon. Be ready foh us, kay?"
I think it's gonna be a long couple of days for the three little munchkins as they wait. It may be even longer for their Mama as she is the one that has to answer, for the trillionth time, "No, we're not leaving today!"
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!
The time has finally arrived. In less than a week, the Bombardier clan will be heading to the Big Apple in celebration of Amanda's 15th birthday, a huge deal for our Cuban family!
We can't wait to get there! From the little ones who are completely adamant about meeting Alex (you do know Alex , don't you? Yeah....Alex the lion from Madagascar who lives in the Central Park Zoo when he's not in Africa or San Diego!), to sweet hubby who is thrilled, after many visits to NYC, to get to go to the Intrepid Museum, to Amanda who's Beatle-mania thirst will be quenched visiting Strawberry Fields and seeing the famous Dakota Apartments where John Lennon resided. Not to mention our excitement to see Mamma Mia! Oh yes, I have a very happy and excited family surrounding me.
As for me? I love NY! (sounds like a commercial, huh?) I can't wait to
eat visit China Town and Little Italy, eat take the little ones to see the Statue of Liberty, eat and of course, pray down every sidewalk I hit that I run into "the man"! If you know me, you know who "the man" is. (Actually, it's kind of fun to see if you do know me. So, I won't say "the man's" name on here and you could leave a comment with your guess.) But, after stalking researching where "the man" lives, works and plays, I may have a good idea of where I could possibly run into him, not literally of course!
Being in NYC just would not be being in NYC if we didn't eat! I am such a tourist! Oh yes, I
am drooling thinking about it could taste it now. hot pretzels from those stands in Times Square, Katz deli, french food, pizza, knishes, egg creams (double yum!) and Schickhaus hot dogs from the Coney Island boardwalk (Nathan's is a bit overrated in my book). I was in Coney Island last when I was 4. That was ummm....25 years ago!
But do you want to know what I am sure will be one of my favorite moments? Meeting up with YOU! Those of you that have emailed and are coming to join our little crew for a small get-together in Central Park! I'm giddy with excitement!!! Some of you are old friends that I can't wait to hug again. Some are new friends that have journeyed into my life through the blog world and have been brave enough to de-lurk, and some of you I feel like I've known forever since you've been pillars of support during some really rough times. Each and every one of you are so very special and I can't wait to see you (and of course your treasures) in person!!! Thank you for making the effort to get out there. I really am so, so excited!
I love this sign. Notice it says "A Quiet Zone". This is hard to do with the Bombardier Triple Terrors running loose.
Here's the Central Park scoop:
WHEN: Sunday, August 16 at 12:00 p.m.
WHERE: Sheep Meadow in Central Park. West side, mid-Park from 66th to 69th Streets. We will stay closer to 66th Street by Tavern On The Green.
WHAT TO BRING: B.Y.O. E. (bring your own everything!) Anything and everything you want or will need. Staying in a hotel makes it difficult to 'pot luck', therefore we will probably just grab some drinks, sandwiches and a blanket
borrowed from the hotel.
The plan is to spend a couple of hours letting the kids do their thing with their new friends while we chit-chat, mingle, and better get to know each other and our families. Then around 1:30 walk over to the Central Park Zoo (on the SE corner of the park -64 St.) We'd love for your family to join us! So, if you're up to it, we can make an afternoon of it together! I know the kids would have a blast and it's supposed to be a beautiful, sunny day!
If you haven't decided if you can or want to come, it's not too late! Please join us.
I will have my cell phone* with me if anyone wants to call, or if you can't find us on Sunday.
* if you don't have my cell phone, please EMAIL ME and I will give it to you.
I couldn't ask for a better life filled with lots of kids, an adoring husband, chaos, laughter and more love than you can imagine! That's my life....and I love it!