Results of Nathan's Sedated Echocardiogram

It was a long and disappointing day, so I will keep this brief. I need to go to bed.

Nathan's Sedated Echo showed his levels were indeed critical. Today's appointment not only confirmed the 70-80 readings of 2 weeks ago - but while sedated Nathan had peak gradients of 110 mmhg. Yes, 110, that was not a typo folks.

Nathan's pediatric cardiologist will be having a consult with 2 surgeons this coming week and we will be scheduling him for a valvuloplasty in the next 2-3 weeks, as soon as we can get in. (not positive where this will take place yet - depends on the consulting Dr recommendation and if the surgeon agrees Nathan can have the balloon valvuloplasty and not the scalpel valvuloplasty)

Nathan's Sedated Echo

Nathan is scheduled for his sedated Echo in 1 week, Friday 1/30/09 8 am. Good thing to because his cardiology referral approval from our insurance runs out on 2/1/09.
We squeaked that out!

When speaking with the clinic staff, I was asked about Nathan's "Red Flagged" chart. Since he has allergies his chart needed even more additional consult approval in order in ensure his allergies would not interact negatively with his sedation. While on the phone with the staff they ask me about Nathan's snoring and sleep apnea. UHHMMM - I reply "Do you have the right chart - Nathan Baierl - B-A-I-E-R-L? Because uhmmm, he doesn't have sleep apnea or snore? "

I become alarmed - "Do you have his allergies listed there, because I would assume that is why his chart is "Red Flagged"

ARE YOU KIDDING ME? They either incorrectly had his chart labeled or had the wrong chart, and these people are going to work on my infants heart! AAAAAAHHHHHHHHHHH!

Must be because we have such a common last name (Smith, Jones, Baierl) - happens all the time you know: Dr offices pulling the wrong Nathan Baierl chart - such an ordeal to have a name like that - wish there weren't so many Baierls out there, then I wouldn't have to keep making sure they had the right one. Jeepers people.

To Sleep or Not to Sleep

I have given up on the idea of ever sleeping.

I have filed the idea away in my mental filing cabinet as something that only dads do.

I am not awake because I am worrying. Unlike most mothers, I actually don't do this much. This is a lesson God walked me thru long ago when David was a baby. Plus, I am not a problem fixer/thinker by nature. I am more the martyr type -not an attractive trait.

I am awake because one of my children is being very unlovable. Too bad ears don't have an off switch. I find myself calculating how many hours it will be before the next episode. hmm what will be next - peed bed?,scary dream?, early snow plow?, police at my neighbors? Why bother. I need the caffeine patch. Have you seen the movie Meet the Robinson's? The scientist mom wears a caffeine patch. She doesn't sleep for 8 days - no side effects just untimely and uncontrollable screams - no one would ever suspect anything.

AWANA Van Ride

I love AWANA. The curriculum is great. The leaders are great. Even the van ride there and back is great. For 4 years David (and now Caleb) have participated in this great biblical based program. But this entry isn't about what happens at AWANA, it is about what happens on the way to and from AWANA.

For years we have taken the Hionis kids in our van with us. I tell you what, if you ever want to laugh and get a headache all in the same 20 minutes,you should ride in our van on a Wednesday night.

Mostly, it is the LAME knock knock jokes that eventually cause me to laugh. But not tonight. For some reason we started talking about spankings on the van ride home. I have no idea why - it wasn't like someone was going to get one or even deserved one for that matter. But Mr. John (as the Hionis kids call him) decided to share what it was like to get spanked by his dad when he was a kid. He told of how his dad actually took off his belt and spanked him with that. David then wailed loudly from the far back seat:"OOOOH I CAN EVEN FEEL THAT -OOOWWWWW!!!!!"

This brought forth thunderous laughter from all the other kiddos. Noah says: "AH good one David!" and for a full 5 minutes we all belly laugh.

Laughter is just exactly what I needed tonight - thanks guys.

Nathan's Heart Update 1/09

Nathan saw the pediatric cardiologist for another round of EKG's and ultrasounds. This appointment was to take a measurement to see how his aortic valve stenosis has changed this last 6 months.

In July, his stenosis level was at the upper level of moderate at 45mmhg. That means if his blood pressure on his arm is 100/60 then his pressure in his heart is actually 145/60. Since a normal heart mmhg is zero, we had ourselves a starting point 6 months ago. Then, we were able to measure the amount it got better, stayed the same, or got worse over a 6 month period of time. Our pediatric cardiologist said the magic number is 50 - anything over that means intervention.

The news was NOT good. His stenosis is now 60 - 70mmhg. This is a HUGE jump in the negative direction. I was heartbroken for the little man. Anything over 50 is considered severe and over 70 is considered critical. We had hoped to not need surgical intervention ever, let alone this soon.

Nathan will be having a sedated Echo cardiogram in the next 2-3 weeks which decides when a balloon valvuloplasty procedure will be preformed.

Please keep Nathan in your prayers as the next step after balloon valvuloplasty is to have heart surgery to replace his aortic valve. This is something we want to avoid altogether, but certainly don't want to face it at this age. (He is 16 months old) The older he gets, the less chance that he will need his heart valve replaced multiple times to fit his growing body. Pray also that we would have wisdom in making our next decisions as to the best hospital for pediatric heart surgeries and that our HMO insurance will approve his out of network care. Pray also that he will not have any allergic reactions to the anesthetic used in his next echo cardiogram, since he has so many allergies, I am concerned about a reaction above the normal vomit/nausea.

Nathan loves oreo cookies

Quick video - How do you like to eat your oreos? Is it just like Nathan does it?

Former Foe Turned Friend

I had the most wonderful talk with David after our bedtime devotions.
Nathan went to bed early allowing me some extra minutes.

Our devotion was on kindness with a scripture of Matthew 10:42. This verse talks about a reward that awaits the believer for their acts of kindness to others.

David begins talking about Chase. (This boy has become the topic of many conversations and has, in my humble opinion, been strategically placed by the Lord, into David's classroom.)

Chase has special needs. He had some sort of brain trauma that causes him to not fully learn from consequences. Very early in the school year, before learning some of the "social ropes" of school, David and Chase had a fist fight on the playground. Long story. Anyway, since then David has decided to befriend Chase and do the best he can to work around "Chase's weird behaviors."

Once while visiting the classroom, Chase introduced himself to me by saying David was his "bud". I smiled thinking of how they started off throwing punches and now they were buddies. Girls would never do this.

I am so glad for David that Chase is in his life. He has had some really wonderful heart connects applying Gods word this past semester, because of this boy.

David says to me tonight. "You know what, mom? Chase was a bully to me at first, but now I think I am the only 2nd grader in Levi Leonard that Chase is nice to. That is because even when he was unkind to me, I decided to be kind back. I did not return unkindness for unkindness." (I repeat that phrase to my boys many many times: We don't return unkindness for unkindness, let's be kind to each other, a little more kindness.....)

There was so much more to this conversation, but mostly I just wanted to post how much I appreciated God giving David an application to today's devotional in a boy named Chase.