Category Archives: sick

I have stuff to say

With Jimmy Kimmel and his son’s diagnosis in the news, along with the fact that the end of this month marks one year since my most recent Open Heart surgery, I have stuff to say.

Plus, we just announced two days ago I’m pregnant with our third kid. (Due in October. Yay!!!)

This takes time and energy – I don’t have an overwhelming amount of either at this moment so I’m making this place holder blog.

If you want to read up on my original Pulmonary Atresia diagnosis and being born in 1980 with CHD, you can find my story (With pictures!) here, here, and here.

I hope to address some more specific issues that have been talked about the last couple days because of Kimmel’s story soon.

Thanks for stopping by.
***Update*** I never had time to go back and write a post, so here are some of my thoughts I did share on Facebook:

From my personal page on May 5th: The following is a comment I posted on a fb article. Some of my thoughts regarding Kimmel’s son, our broken system, and Congential Heart Defects. 

You get a repost because my brain is exhausted and full to the brim with recent insurance, care, CHD, and pre-existing conditions talk. **edit: and for it’s worth, I wrote this before yesterday’s AHCA stuff. I know little to nothing about it. This pregnant wife, mother of two, CHD patient has other things consuming the day. 😊** 

“Hi. An adult here, born with CHD. In fact, very similar to Billy Kimmel, I was born with pulmonary atresia. Complete blockage of the pulmonary valve. A death sentence if not immediately addressed. (I had my first surgery at 24 hrs old in 1980.)

It wasn’t an issue so much when I was a kid (parents insurance, etc) or when I was working full time (group insurance typically covers pre-existing conditions) – my issues are now. 

Zero ACA plans cover the specialized cardiologists in our area. Regular cardiologists can’t help me and ACA plans (which we can’t afford) don’t even cover the cardiologists that can help me.  

Insurance is NOT the same as Care.

It’s extremely complicated. The old system was broken and the new system is also broken.

At the same time, I don’t want single payer because waiting lists and lines kill people like me. They kill people like Billy that grow up and are no longer cute kids.
I’d rather take this Kimmel coverage and have people taking about CHD. The Number ONE birth defect. Did you know that? 

1% of kids are born with CHD, yet it receives very little coverage and very little research. Kids born with CHD like Billy and me need life long monitoring (at minimum).

There is no cure. Once a heart defect, always a heart defect. Yes there are repairs and some can lead fairly “normal” lives, but it’s never gone, cured, or fixed.

I wish we were talking about that.

Want more info on CHD? Check out the Adult Congenital Heart Association.  

https://www.achaheart.org
Not the American heart association. They tend to ignore us ;-)”

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Filed under cardiology, health, sick, Uncategorized

Feeling better

My migraine has eased a little – hallelujah! I wasn’t sure if my scheduled pain medicine for my heart surgery would also assist the migraine. It appears it did.

For me migraines mean nausea, which stinks when one is trying to take medicine. Nothing worse than throwing up meds before they have a chance to help. Thankfully my Tylenol stayed down and my head as well as the rest of me seems to have pain under control. Thank you God.

I hope to be able to post a little more the next few days on my hospital experience. I have so much (and so many people) to be thankful for.

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Yuck!

We’ve been on the down low lately because on March 21st, I got hit with the stomach bug. Not only did I lose 4-5 pounds(!), but it triggered a migraine.

JJ had to leave his work early (it was only his 2nd week there!) because I just couldn’t take care of the kids. And of course, 48 hours after I got it, little E got it and JJ 48 hours after that. It’s a miracle Z escaped it all together!

Sweet baby boy had it linger around for almost 2 weeks. After a few days, we would think he was ok and then he would throw up again, 3 days fine, then not, 2 days fine, and then not, etc.  And even at the very end, apparently his little tummy shrunk while he was sick so he was back to his cheerful self – and we accidentally overfilled him. Add to all of that, he was temporally lactose intolerant so we had to switch his formula. YUCK!

It was just a two-week period that I’m so thankful we are through. Everyone is finally back to normal.

Speaking of little E, it brings me to both my current praise and prayer request.

Praise!

When E was about 1 month old, we, along with his pediatrician, determined that he was cow protein intolerant. After a lot of thought and prayer, we decided to stop nursing him and switch over to a specialized formula. Within 48 hours he was practically a different baby! While we were really thankful, any momma out there that goes from nursing to full stop knows how difficult that can be. It’s both emotionally hard (momma guilt!) and physically painful. However – after a couple of weeks of a much happier, healthier home, we were so glad with our decision.

Here’s where the praise comes in. Little did we know at the time (October) that we were headed toward heart surgery. Can I just say I am so thankful for discernment and wisdom back then?! I cannot even imagine trying to stop nursing because I have heart surgery coming up.  WOW. I’m so thankful I don’t have to deal with the emotional (and painful) choice right now. It is so wonderful to be able to look backwards just to October and see how even then, God was directing us, helping us make difficult decisions that would ultimately help ease our way to heart surgery.

Prayer

Related to all of the above – we are really hoping and praying E will be sleeping through the night by the end of May. Both for the ease of those taking care of the boys while I’m in the hospital and for us when we get back home and are in the middle of a long recovery road. Honestly, with Z, he was a big baby and I’m pretty sure he was sleeping through the night when he was 3 months old. E is a different story. A month ago, we assumed he would be there by 9 months old, but the stomach bug set us back.

During the stomach bug we took him to the doctor and he weighed in at the 15 percentile range. Basically, right now at 7 months, E weights 16.5 lbs. Z weighed this somewhere around 3 months old. They could not be more different in body type. Between trying to get on track post-stomach bug, restarting solids, and thinking E’s in the middle of a growth spurt, he wakes up at least 2 times a night right now.  (He was down to 1 most nights, and sometimes none.)

Like most things, it’s small by itself, but it’s big to us right now. No matter the case, we trust God will provide. Either though E sleeping through the night, or endurance for those looking after him.

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Filed under baby, cardiology, sick

Quick update

I posted about this a few weeks back, my younger brother and his wife had two little boys born at about 27 weeks.

Please continue praying for them, Jack in particular is having a very difficult time.

Looks like he’s picked up an infection. The antibiotics he is on is the last medical recourse they have. More info and updates can be found here: www.eliandjack.blogspot.com

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NICU’s

Just an update on 3 of my nephews.

The twins are (as expected) spending the first 80-100 days in the neonatal intensive care unit (NICU).  Prayers are much appreciated and you can follow their story here: eliandjack.blogspot.com

What was NOT expected, my other nephew born on Friday is also in the NICU (they were born at different hospitals, so NICU’s across town).  Prayers are also appreciated for Walker as he is fighting what the doctors believe is pneumonia.  You can follow his story here: lancebauslaugh.posterous.com

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Lisa

L-R Michelle, Sophie, Lisa, Debra, Paula at our friend Jenni's wedding

wow… It’s been an incredible couple of years.  I am so thankful to have met Lisa two years ago.

Lisa had an infectious smile.  Seriously, think “Stereotypical, gorgeous Texas Woman” and that was Lisa. She could line dance. She could wear the fanciest high heals with confidence. She could walk into any room and instantly have new friends. She would do anything for her friends. Need an encouraging text? Have a bad day and want to have a shoulder to cry on? Want a nice note in the mail via snail mail out of the blue? one word: Lisa.

On our first small group meeting, she shared about her recent health issues, how she had a very rare tumor and surgery to take it out cost her part of her lung.  It sounded serious, but we all prayed with her and thanked the Lord that so far, she was able to move forward, increasingly with distance in time from the illness.

We celebrated together a year ago when she had a clean scan. No tumor!

We laughed together until we cried at her parents house for our small group retreat last spring. I don’t even remember what we were laughing at, but it was marvelous.

Also last spring, she sat a boy (my now husband) down for a conversation about “his view on relationships” drawing out info to pass along to me. (I had no idea she did this until after!)  After my hubby & I started dating, I learned that she had numerous conversations with him, including a “Don’t you break her heart! Don’t you String her along!” conversation.

We cheered her along, prayed for her, as she traveled to Bulgaria in the summer to train and equip christians as well as to work with orphans.

She encouraged and uplifted me as we worked together to be wise and make good financial decisions.

We prayed profusely as word that the tumor was back and she needed surgery again. When the September surgery didn’t go as well as hoped, we prayed, we laughed, we visited, we believed that God’s plan is unknown to us and it is better than we could imagine.

We cried when the tumor was back again 2 weeks ago and the outlook was not good.

We knew the end was coming quick. We know that God loves Lisa more than any of us.

And today we celebrate.

With tears in our eyes, but a song in our heart, we know that Lisa is with our Heavenly Father.

She is no longer in pain. She is no longer sick. She is no longer fighting. No longer struggling with the things of this world.  She is with the One who loves her.  Peace and Comfort. Warmth and Light. And a place where she can once again, use her beautiful voice to praise the One paid her debts and will one day raise her life up from the dead.

Finally I ask, do you know the One? Did you know that he paid your debt (just like he paid Lisa’s & mine?). And he promises to raise your life up from the dead. Both litterally in the future (we’ll all die) BUT also Now.

Live life abundantly, because that is why he came. Lisa lived life to the fullest because of Christ. I hope my life Count’s for Christ as the example that Lisa set did.  I hope that one day, it will be known that I lived Life Abundantly, because of Christ.

John 10:10b I have come that they may have life, and have it to the full.

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Filed under christ, death, hope, sick

Paper chain count down

This weekend, we made a paper chain for a friend who is counting down to graduation. As I got home today, I thought about making a paper chain counting down to when I no longer have a “crazy” neighbor.

Not counting today – that’s 5 days to go.

If you think of it – please pray for me. I’ve been sick, so I’m a bit worn out and I still have so much to do / pack before moving. Plus moving itself, is a bit of a beatdown. I have a handful of people lined up already (and hopefully a few more will say yes too) along with some possible truck options. So, yeah, super thankful for that. But prayers for the next few days and Saturday especially, would be appreciated. (even if I were healthy things like moving tend to use up every drop of reserved energy.)

And thanks for the suggestions DL. I’m transitioning to paper plates tonight!

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Filed under friends, moving, sick