Friday, January 30, 2009
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.
Nathans' 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)
Thursday, January 22, 2009
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.
I have filed the idea away in my mental filing cabinet as something that only dads and pets 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 but a true one.
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 - a peed bed?, a scary dream?, a ridiculously early snow plow?,police at my neighbors? Why bother. Sleeping is for sissy's - I will sleep when I am dead.
I need the caffeine patch. Have you seen the movie Meet the Robinson's? The scientist mom wears the caffeine patch and doesn't sleep for 8 days - no side effects just untimely and uncontrollable screams - no one would ever suspect anything because I do that anyway.
Wednesday, January 21, 2009
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.
Saturday, January 17, 2009
Nathan saw the pediatric cardiologist for another round of EKG's and ultrasounds of his heart. 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 hospitals 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.
Tuesday, January 13, 2009
Sunday, January 11, 2009
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 is 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 school that Chase is always 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 todays devotional in a boy named Chase.
Thursday, January 8, 2009
He is a CRANK.
Caleb is done tolerating this irritating whining brother of his.
He says to him:
What do you want? to eat, juice ?
- jeez, have some medicine and take a nap!
I laugh because I was thinking the same thing Caleb said. HA
Wednesday, January 7, 2009
Now I have NEVER been a fan of the baby stage, but I have got to tell you it seems that now that David is in school, I am even more ready to leave this stage of life. I have progressed into the car pool, sports dominated scheduled stage of life, but yet have the preschool and the baby stage still occurring.
Happy is a choice I tell my kids and have been reminding myself of this more and more frequently. Suck it up Jenny, get over it, no one likes your pity party. Including yourself, I might add. Still I have been in quite a funk lately.
Winter is here and I HATE it. I don't like leaving in this weather with everyone and I like staying home in the same 4 walls with them even less. John has been working on a HUGE project that gets launched this week and has been busier than normal. (and normal is pretty busy as it is)
Social isolation is difficult for me.
So here is the kick in the pants I get today.
I am reading my Bible this AM and am appealing to God for the desires of my heart. I confess to him that I am crabby all the time and am in a funk. I have recently started saying: this is your day Lord help me to order it in a way that is pleasing to you.Then I open up to Psalms for today's scriptures.
Psalm 50 (subtitled what pleases God) the passage goes on as a conversation between God and the nation of Israel. God proceeds to tell them to stop gossiping, telling lies, breaking your wedding vows and ignoring correction. He continues to say I don't want your burnt offerings. If I wanted a bull or a goat for food I wouldn't tell you. I don't need you to do anything for me. I am the creator of the universe, everything is mine. So stop giving me what you think I want. The only thing I want you to give me is thanks. If your prayer and offerings are in thanksgiving or repentance then I will accept them. But your attitude is all wrong and your have forgotten to be thankful to me.
HMMMM. I smile at the recurring lesson here. I have been thru this lesson before. I have preached to my kids about this. Matter of fact, recently my older boys have been VERY unthankful and rude to me and I have made note of this. Not to addressing it correctly but to feeling justified in my funk and feel righteous in my complaint to God. (nobody likes me, everybody hates me, think I'll go eat worms......) See they are all out to get me - those unthankful little children!
So I close my Bible and dwell on and thank God for the MANY MANY things I am thankful for.
Change in my perspective. Amazing what a little thank you can do. End of pity party.