From Elise's Mom

Ya know.... sometimes you look to your children for encouragement....for strength....for leadership. Ours have given us that and much, much more, especially during the last few weeks.

Elise texted me a couple of days ago so she could add to the blog. Told her I went to Target with Grandma and Karlee and ran into two wonderful women I knew from the Stake. The love and excitement about did my heart in, especially as one of them whispered to her young son, "This is the Lady we've been praying for." And then he was fascinated.

Elise is always on top of things (as are her children, on top of "things"; new ideas, experiments and "what happens if we...?").

And when she hadn't posted to her blog for a few days, I'm thinking, she's taking a well-deserved break or out with their Carlsbad, NM friends they love so much. After all....I really do know that "it isn't all about me!"

Got a call this afternoon from her for her physician father. She has a 105.6 fever. Has for a few days. She didn't want to worry me. Another unselfish action. Last time she had a fever that high it accompanied seizures. She was checked into the University of Virginia Hospital and EKG tested and told not to let her get a fever that high again.

So hear I sit....seven hours away....praying she goes to the hospital.....praying Weston will take a bottle for the first time from someone who loves him.....praying the girls will put their experiments and new ideas on hold until their mom gets better.

Why does the heart get so involved in all the affections of the family?  As Brittany would say,  "AUGH!!!!!"

Bummer dude.

This little guy is four and a half months old. He is scooting. Practically army crawling. I should be happy, elated, proud even.

Wanna know how I feel?

Seriously bummed.

I know how fast my kids grow. I know how quickly they walk, talk, learn, leave my house.

He doesn't have to rub it in.

Also: can someone please explain to me why my girls are fascinated by pouring a full container of liquid soap down the drain? I am baffled. And totally annoyed.

Hanging in there.

That's what mom will say if you call and ask how she's doing.

Catch up.

A week away from home means catch up. Catch up on bills, on housework, on actual work... I had a lot of stuff to do when I got home.

Usually when I am in a crunch like this, I turn on the TV and let my children watch Backyardigans and Sesame Street for. hours. And I end the day feeling ashamed for creating zombie children without social skills. So I thought I would be fun mom for a change and bring out the painting easel my mom got the girls for Christmas. It started well. I typed on my laptop and uttered oohs and ahs at the appropriate moments.



As I'm sure you know already, it did not end well. I started to zone into my work. And zone out from my kids. And let me just thank Melissa and Doug for washable paint. Because it ended up all over the walls and the door frames, and our stark white kitchen vanity.

The rest of the day didn't go that much better. Bonnie and Clyde over here kept themselves busy.

• They played "ocean" in their swimsuits. This game consisted of fleeing from a man-eating shark. It resulted in noisy, screaming sprints up and down the hall.
• The younger one whacked the older one on the nose with a closet rod. That resulted in a bloody nose and a clean off in the shower. Conveniently she was already in a bathing suit. I should note that the hitting was an accident. I believe it was part of some rowing in a boat charade.
• They used a loaf of bread to pretend they were flipping pancakes.
• They painted with nail polish on the wall.
• And while I was totally immersed in the computer screen, they snipped off a generous lock of my hair. I don't know how that happens.

And you wonder why I had to leave my mom.

Another good reason for a resident doctor.

My mom is still practically passing out every time she stands up. But she can stand. And that is progress.

In other news, her doctor prescribed her a medication. Well, he prescribed several. But the thing about this one is that our friends at the pharmacy substituted it for another medication they had handy. Problem with this substitution is that it strips the body of potassium. (You know--one of those electrolyte elements that contributed to the heart stopping problem in the first place.) Yeah. Not cool. Dad had a nice chat with them, adding, "an error like this could've killed her."

Yikes.

Not. Again.

Mom is home. I am relieved. It's always nicer to sleep in your own bed no matter how wonderful the nurses and food are at the five star Baylor Heart Center.

Unfortunately, about five minutes ago, we got this text from dad:

We are home. What a relief. But we've already had a yellow flag. Mom, Gma, and I were sitting in the family room watching TV. Mom said she had to go to the bathroom, so she got up and left. A couple seconds later, we heard a sickening thump. I jumped off the couch and found her in the hall, by the blanket closet, coming back to consciousness. She had a full on, board certified syncopal episode. She got a big goose egg on her head. I immediately put her on the telemetry unit bro Dalebout set up. No changes. She just passed out from the same orthostatic mechanism that she has always had. Thank goodness for the EKG. If we hadn't had that, we might be loading her into an ambulance right now.   We were all seduced into complacency because of the comfort of being home. We have to remember she is still really an ICU patient.  I gave her a rule to count to ten each time she changes from lying to sitting or from sitting to standing. 

Seriously. The woman is begging to go back to the hospital. Sheesh.

Dad continues...

You guys will never know how glad I am that so much help is around. Sister Scholl called to offer us Costco booty, since she was going, brothers Dalebout and Fry set up the EKG with telemetry and internet access last night, the house was spotless because of Gma and a bunch of ladies from the church here this morning and weekend. I could go on and on.  Bro Dalebout said something interesting that I could relate to. When someone falls ill, the church rallies, and "bubblewraps" the person, and there's nothing for most to do to help. So it's nice to have something to do, meaning the monitoring help. You guys can relate to that.

Anyway, mom is resting now. Nursing her goose egg. I'm really glad we are not sitting in an ER right now.  Also, we talked to Gpa, invited him down soon. He said probably. So we will hopefully have a visit from Gpa soon. Hope you guys are well. Talk to you all soon.

Thank you all so much for the help. We are grateful for the help from our church. And we are also so very grateful for the many many many of you who are not members of our church who are doing so very much to help and show your love. Your prayers and happy thoughts have worked miracles. And apparently we still need them. Prayers and happy thoughts that is. We are not begging for anything else!

Gracias. Danke. Tak. Xie xie.

It's impossible to express the depth of my gratitude for you people.

We have been blessed with
Food.
Babysitters.
Gifts.
Love notes.
Friendship.
Anonymous breakfasts on our doorstep.
Cleaners.
Chauffers.
Flowers.
Drinks stuffed with electrolytes.

It is hard to go to my home and leave my mom. It is hard to not be the one caring for her.

It would be harder if I weren't leaving her in such good hands.

Thank you to all you locals who have taken such good care of us. And thank you to you distant folks who have done the same. We are indebted.

She's coming home today.

Today from Dad

*received by text this afternoon.

We've had a great day. Mom's drips have been off for more than 24 hrs. She's on oral medications only. This morning Dr Khan turned her paced rate down to 90 from 100. She also shut off the overdrive feature, which means that instead of speeding up the rate when the device senses ectopy, it now inhibits the pacing. This will allow her myocardium to rest a bit more. So far she has had NO ectopy beyond just a few unifocal PVCs. No runs, no hits, no errors, as we say, right Jaba? All good things for the defense. We've had Gma, Elise, Brad, and kids and Karlee in the room for about an hour, and she has done great. Tonight, Scott Dalebout, and Jim Fry are helping us set up a telemetry unit in the house so I can watch her from anywhere with internet access. When we get home tomorrow, it will lower my anxiety level substantially to be able to see what is going on inside her heart. Now all I need is a device on her head to read her thoughts. Then I can be the perfect companion.

I will probably stay with her for this coming week. If all goes well, I will go back to work the following Monday. She will need somebody to be with her all the time for a while, not sure how we will accomplish that yet. Love you guys. More to follow when news comes.

Random Thoughts.

Mom and Dad needed some things from home last night. He called me at about 6 and recited a list of items for me to bring. Grandma Glennda tackled my munchkins and put them to bed while I drove myself to the hospital and enjoyed the company of my parents.

It's always been a privilege to be in the company of both parents as a single child. I remember the first time this happened; I was living in Federal Way (I was 12) and all the other kids were having sleep overs. The three of us watched Charade. We had a great conversation. I felt like a real adult.

I have the same kind of pleasure from this association now. My parents have a gift of treating their adult children as peers. Friends.

Mom was happy. She smiled. She even laughed a few times. She feels confident and hopeful that she'll eventually recover. She told me to say that she reads her facebook and comments on the blog. And what she reads makes her day. Thank you for lifting and encouraging my mom. You are making all the difference.

While I was there, a couple from church visited. Mom's heart started getting excited. When they left, Mom offered, "You know how I calm my heart down, Elise?" Of course, I had no idea. "I go through the steps of making taco soup with your girls. I get out the ground beef, I help Claire onto a chair to help, I place the pan on the stove..." Genius. At some point Dad interjected, "If you find Mom ignoring you, you know she must really love you."

I have to add that in the past week her hospital room has become a holy spot. You can read a little about that on my sister's blog here and here. And tonight, its holiness was intensified for me as I witnessed my parents enjoy each others companionship. They've always loved each other. A lot. But. It's like I've actually seen them fuse.

As dad walked me out to the car, I thanked him for taking care of Mom in a way none of the rest of us could. He responded, "Whatever. I took care of myself." By protecting Mom's life, he has been ensuring his own happiness.

Thank you for your love. And your support and your prayers.

Another Dad update

*We children received this update from Dad via text at 9:15 Central Time this morning.

Mom has had a pretty good day. Nights are a bit hard to sleep with all the rest we are getting during the daytime. But a good piece of news is that she seems to have almost no ectopy [funky heart rhythms] when she is up, moving about. I've watched closely to see if this is a sampling error. The telemetry unit has more difficulty analyzing the EKG with the patient moving. But it looks real, though I can't explain it. The salutory effect of the activity seems to last about half hour after she stops too.

I'm getting very anxious to get her home, where we can both rest in earnest. The worry (imagine that I could worry) is that I won't have all the backup there that this fantastic ICU has. I have called a friend, Scott Dalebought (sp). His business involves hospital monitoring equipment. I have asked a favor, that he could loan us some sample equipment so that I can at least watch her EKG from time to time, just for the reassurance it will give me. He has generously set up some stuff to help. It will make our transition to home much easier for me. The device she has implanted is state of the art, it will communicate by bluetooth-like radio waves with a receiver in our home. That info will then be downloaded via landline to a database that mom's doctors tie into to see how she is doing. The weakness is, it is not always real-time. As I've told you guys, this kind of heart problem is moment to moment.

She is resting right now. Hopefully home tomorrow or Monday. The drips have been off for about 15 hours. They are planning on bringing her paced rate down from 100, to 90 in a bit. We will have to see how she does with that. I think the overdrive pacing has been very important in keeping any ectopy from having its way with her rhythm. Its one of the most important steps to getting her out of here. Prayers.

Like flipping a switch, her condition could change from flourishing, to death, not to put too fine a point on it. For my own peace of mind, I need to see her real-time EKG now and then.

*more later.

My poor mom

My mom is still hurting. I should emphasize that while she does have broken ribs, most of her pain stems from complications she's experiencing from previous surgeries. We are hopeful that the pain subsides quickly.

I say this because my mom is tough. Anytime she's sick she showers, gets ready for the day, and acts normally because she's sure it speeds up recovery. This is a woman who walked herself to the hospital in labor, and who made nary a noise during delivery. So when I heard her whimper while talking to her on the phone today, it was kind of scary. I hope things get better soon.

I am happy to say that her release date is still looking like Monday. She can't wait to leave. I can't say I blame her.

In the meantime, I spent the morning trying to find a way out of the house while the floors were being cleaned. I drove around for an hour until I ended up at Barnes and Noble where I found myself hefting a baby carrier, carrying a large diaper bag, and failing miserably in my attempts to wrangle two loud and energetic children while traveling up the escalator. It only got worse when I went to check out and dropped an armful of homeschooling material at the cashier station. (I have been planning on homeschooling Grace next year.) The woman eyed me skeptically. I'm pretty sure we were thinking the same thing. That I should just place those homeschooling books back where I found them, run myself and my children back to our car and pretend it never happened.

But I bought them anyway. The cashier handed Grace a bag of books and said, "You look like you're a good helper."

Grace grabbed the bag of books and said, "Not really," and asked me if I would trade her bags so she could have the light one.

And that is why I am not even being considered to be the one taking care of my mom. Unless any of you are aware of a very reasonably priced boarding school for exceptionally young children.

Also.

Pretty much this blog is just the facts. I am really lame at any attempts to convey feeling. If you want the nitty gritty details of the ordeal, I suggest checking out Brittany's blog.

Walking.

Mom came off the Lidocaine today and seems to actually be doing better without it. It was also the first time she was able to get up and walk a lap around the ICU.

Grandma Glennda and I came to the hospital to watch and talk with Mom while Dad went out and ran some errands for the two of them.

Dad called Mom several times during the three hours he was gone. Each time Mom urged, "Hurry. Come back soon." He has been her diligent caretaker and companion. Today was the first time he'd left in over three days.

We had a wonderful visit, though, despite Dad's absence. It is always wonderful to be with Mom. And it was the first time that I felt she will be able someday--relatively soon--to return to her happy, vibrant self.

She had read my post about the red book. She wanted to inform us all that she had received the handout from Cindy Willman in the Frisco 1st ward, I believe. She said it was one of many things Cindy did so well. She had kept it this long with the intention of doing it, and was just getting around to it. I bought her the binder and dividers today.

While we were there, she stood up to use the restroom and nearly passed out. I'm sure her heart is experiencing some fatigue, but its the pain in her body that is taking most of her attention right now. We are so thankful for your prayers and your gestures of love and aid. You are wonderful.

Really Fast.

Grandma and I spent almost all day with Mom. She is okay. No major emergencies. She is in a LOT of pain. If you feel moved in that direction, perhaps you could pray for her relief.

More later. Plus pictures. Once I get my munchkins in bed. Right now I have one screaming in my lap and two screaming behind me. Good for Mom we'll be gone before she's back!

Tough Day.

In her own words, "Today was a bad day."

That's how it is, I guess. A couple steps forward, a step or two back.

She specifically requested that I tell you how desperately she wishes to respond to you. Last night at about two o'clock in the morning she was up reading your comments. She was so moved by your words that she began to type. And then her nurse came in. She asked what Mom was doing that was making her heart go crazy. And so she had to put the computer away. She expressed to me that she would be responding to each of you individually at this moment if it were possible. She is so grateful. I thank you.

Today I found out that she won't be home before Monday. They may push it back further depending on her progress. I learned that she will need help and monitoring for considerable time following her return home. I'm not sure how long that will be. We are blessed to have her mom, Grandma Glennda (the good witch of the North, we call her) here to help. I so wish I could be here to help her indefinitely. My kids are just too darn noisy. We may actually have to stay away to help her heal.

I have to express my gratitude here for the people who have watched my "little terrorists" so I can be with my mom. I am so very grateful. Thank you. You have blessed me so much.

Below are the pictures I promised.

The following are from yesterday.

This is from tonight. She's in more pain than she was yesterday.

 
Again. Thank you for your prayers. Thank you for your love and your friendship. Thank you for everything.

You know what's funny?

My mom is incredibly organized. I mean, crazy-awesome organized. She uses her day planner religiously, files and indexes interesting articles, and alphabetizes her spices. So, it really hasn't been a difficult stretch for me to come in and pay the bills or cancel/modify her appointments. She made it very easy.

The funny part, is among her to-do items I found a sheet entitled "Building a 'Red Book' of Important Family Documents." It was dated April 18, 2006. I'll bet it went into her to-do pile just recently.

I highly recommend it. Make one just in case.

Wish I could credit someone for its authorship. Maybe one of her ward members knows who did it. [update: my mom says she credits Cindy Willman for giving it to her.]

Going to see her now. I'll post when I get back. And I'm getting the camera too. Yay.

[click to enlarge]

Sorry.

I came home from the hospital last night and crashed on the couch and didn't wake up until 9. And I left my camera at the hospital. So much for promises about pictures.

But there are additional pictures from our previous visit. I'll post those.

In the video post, someone mentioned they were surprised at how quiet and calm it was in the room. It definitely was. She couldn't speak above a whisper.

Last night when we went to visit, she looked much better! It is so obvious to us that your prayers and thoughts on her behalf are so helpful to her. She seems increasingly able to express emotion. Of course, she's still not laughing and joking, but she is speaking louder and smiling more. At one point, Brittany said her heart looked stressed, and then she became worried. She closed her eyes, laid very still, and began breathing deeply. Her incentive to avoid defibrillation is very high because it's so painful. Turns out though, that me and Brittany can't actually read those heart monitors very well (imagine that) and it took Dad to tell her that she was actually just fine.

Last night I asked Dad about the plan. Her doctors have begun to wean her off the drugs and today she will be coming off Lidocaine. We'll see how she does with that and then they'll start taking her off the others. Based on her response, she may be able to go home this weekend. They will still consider surgery after that. It depends on how she does at home.

Finally, we also know now that Mom is drinking too much water. Apparently that is possible for someone who carries around a Hawaiian Falls gallon jug and drinks a gallon a day. It's causing her to lose electrolytes. From now on she gets to drink Gatorade.

Here are some pictures from our previous visit.

Your messages here.

So. I haven't been to see her yet. But Brittany and Heber went. Brittany washed her hair, Mom got up to go to the bathroom, and she seems able to read your notes a little!

If any of you want to comment directly to my mom, you can do so by commenting on this post. (For those of you who have done so thus far, I have already printed your comments for her, but you are more than welcome to post more.)

If you want to write a more private note or are unable to comment on a blog post, you may email me at eliseneville[at]gmail[dot]com.

Finally, don't feel obligated. I assure you that she feels the strength of your prayers. We all do.

To avoid confusion.

It has come to my attention that some of you only know my mom, Betsy. Maybe just my dad, Karl. Or one of us kids. My dad suggested that I post a photo of our family for our friends so it is apparent who I am talking about.

Thank you so much for caring, praying, and helping even if you only know us a little.

The photo below was taken at the wedding of Elliot (Betsy's son) and Lilian this August. Its main failure is that it excludes two family members: Jay (who was serving a mission and returned this December), and Weston (my son who was born one week after this photo was taken).

[click to enlarge]

So. Here's a photo of Jay the day he returned from his mission (he served in Pittsburgh).

Here's Weston (who was also posted about yesterday).

Also. Looks like we get to see her today! That means I'll post more pictures. Promise.

Why.

I don't have much new to say yet. Not sure whether we'll get to see her today. I'll post as soon as I know.

A few people have mentioned their curiosity regarding what caused her Sudden Cardiac Arrest to occur in the first place. The short story is, of course, that we don't know. But we do have a few ideas.

Mom has a lifelong history of what you could call head rush. (She has passed this along to several of us.) Her resting heart rate is 40 beats per minute. I think I've seen her pass out 2-3 times--in the middle of nowhere, just a regular day--although I know that it has happened many other times when I haven't been there.

It should have been a huge red flag 6 years ago when she passed out after waking up one morning and stretching. She woke up on the floor, screaming, with a broken foot.

One thing they believe she may have is a disorder called Long QT Syndrome. Say you're looking at an electrocardiogram. (It's a series of wavy lines produced by a cardiograph which measures the electrical activity of the heart.) A normal pattern has a predictable series of spikes and bumps. A long QT pattern shows a longer stretch of the QT interval on the electrocardiogram. Here's what it looks like:

This prolonged QT interval can cause fainting (also known as syncope) as well as Sudden Cardiac Arrest. The QT interval problem can be made worse when the individual suffers a lack of dietary minerals including potassium, sodium, calcium, and magnesium.

Long QT Syndrome (LQTS) is a genetic condition. If Mom's blood test for the syndrome comes back positive, it would explain a lot. It would also mean that the rest of her children and perhaps siblings would have to be tested and receive some sort of treatments (which are usually not as drastic as implantable defibrillators). People with LQTS can live totally normal lives.

The highly unusual part about Mom's case is that her heart is not responding well to the treatment. As Dad mentioned in his update, we expected her to go straight home after they put the defibrillator in. The vast majority of patients having this surgery respond positively.

What they are just beginning to realize there at the hospital is that even though they are pumping her full of electrolytes (which include sodium and potassium--those elements her heart needs), she isn't retaining them. They are considering that she may be experiencing a kidney problem which is drastically complicating her condition.

For now, Mom and Dad are trying to avoid further surgery until they can find the real source of the entire problem. Your prayers in this matter would be so very appreciated.

Karlee and Mom

About 1pm today.

The latest

She has had a rough night. I don't know anymore than that. We know that your prayers have a great deal to do with her swift recovery thus far. Thank you for continuing. We are so grateful.

Visiting

It was a relief to see my dad in better spirits. I have never seen my father as emotional as he has been the last several days. His voice is hoarse, he's wept a lot, he has been exhausted and anxious. But today he was hopeful. And more relaxed. He even thought he might come home for a couple of hours later today (he didn't. She had a rough evening, apparently).

She saw family members one by one. She started with Brittany's husband Heber (who she hadn't spoken to at all yet), then Karlee, then me, Grandma (her mom), Jay, Elliot, and Lilian (Elliot's wife, featured in the video link in my previous post). She even saw Wes. She calls him Hal. Not because she's crazy. It's because she thinks he looks like Harold in Harold and the Purple Crayon. It must be his perfect bald head.

She smiled. That is a big deal. Many of you have mentioned her signature laugh. She can't use it right now. As I mentioned earlier, she has to be cautious. When she speaks, she is careful to emote very little. This has been hard to adjust to since she is by nature very animated. But as Dad explained to us on Sunday (before we were able to see her): "She can't tolerate it. She feels love too deeply. Seriously. She sees you guys and her mind registers deep love, and her heart skips beats." We saw evidence of this when she played with Weston, even insisted on holding him, and experienced a few PVC's (irregular heart beats) which corrected without defibrillation.

Her method of communication has improved drastically since Sunday, but it isn't typical Betsy (not that I should be expecting typical Betsy right now). She is very direct. She says what she wants to say. She knows that if she talks too long, it will exhuast her. She knows if she emotes too much, the defibrillator will shock her. So she says what she needs to say as calmly and directly as possible.

I told her that her name was being offered in prayers all over the country. I told her I had heard that she was prayed for in a Relief Society meeting in our old home town of Gig Harbor, Washington. She said, "I don't deserve it." Maybe that part is typical Betsy.

Today

In the words of my dad, "This went as well as it couldve gone."

Her improvement in the last few days is significant. I cannot emphasize enough how much we believe your prayers and positive thoughts have influence my mother's health. She smiled today and even chuckled a little.

She is cautious. She asks often how her heart looks on the monitors. She wants to be sure to avoid defibrillation. I told her I was sorry about the last time it happened while I was there. I asked her if it hurt or scared her. Carefully and emotionally she nodded. And then told me that life isn't supposed to be easy. I hope she doesn't have to be frequently defibrillated. Seeing that is just awful, but it can't be nearly as bad as experiencing it.

I will post pictures and a video and additional details later on tonight. Thank you all again so much.

Quickly

We are headed to the hospital. We've been invited to see her. We are thrilled.

The real purpose of this is to annoy her heart a bit to see how she responds. It's experimental. We'll let you know how it goes.

As always, thank you for praying.

Another update from Dad...

My dad has requested this be posted here to reach dear friends and family who are praying for us. We all thank you sincerely.

Some of us kids saw him as he was typing this to his sister. Dad was explaining to us a deep sense of the severity of her situation. He showed us charts of her heart rhythm (much of which went right over my head, but Elliot seemed to grasp most of it), and told us a little about what had been going on. He emphasized that we are measuring her condition in terms of heartbeats. He noted that each beat is significant and could change things drastically. Your faith and prayers are so appreciated in her continued critical condition.

Betsy has had a good day.  21 hours without a shock!  I'm not sure what all have heard, so to summarize, Friday morning she had an implantable defibrillator [an ICD] placed, much like a pacemaker, in fact it is pacing her now at a rate of 100 to suppress inappropriate foci of pacing [improper location of heart contraction] inside her heart.  That is her problem.  There are cells in her heart that are irritated by something, which cause them to fire off.  When they do that, the electrical signal propagates to all the surrounding cells, and occasionally puts her into a lethal arrhythmia [life threatening beating pattern].  So far every time that has happened the device has properly assessed it, and appropriately fired, resynchronizing her heart. . . 

The placement of the ICD Friday should have been a slam dunk, we were thinking she could go home Saturday.  But while on the table in the EP lab, she began to go into a malignant tailspin of lethal arrhythmia's.  Each time, the device properly assessed and fired, ending the fibrillation.  But it was far too frequent and dicey to go on that way.  So they put her back under general anesthesia to quiet the heart.  She stayed that way til Saturday morning.  Then a parade of visitors came, and we learned fairly quickly that her heart just couldn't tolerate the excitement of the visits.  Any elevation of circulating catecholamines causes her heart to fibrillate.  She was shocked over a dozen times Saturday.  Each time I could give her a couple seconds warning, but it was excruciating nonetheless...

Today has been a better story.  With sedation, and strictly no visitors, we have been able to keep her ICD from firing again.  She did fibrillate once when the boys came to give her a blessing, and offer the sacrament, but she broke it without a shock, a very good thing.  Continuous shocks cause the myocardium [heart muscle] to be stunned, and the effectiveness of the heart to pump blood is decreased.  This is measured by ejection fraction [EF] on echo.  EF on Thursday was over 55 percent.  She is now about 40... [this is not good.]

So we are very motivated to keep the shocks to a minimum.  Yesterday, the family gathered around her bed and offered prayer.  Each giving voice in turns.  It was a sacred time for us.  This has bound our hearts, and made plainly manifest the deep love each of us feels for the others.  We can't help but feel the love of the Almighty, the reality of our pre-mortal love for each other, and that this event, though painful in the extreme, serves a divine purpose.  I have learned that I love this woman more than my own life, and will do anything for her.

Today has been much better.  No shocks for 22 hours now.  She's on the mend.  Her doctors are considering surgery to cut the sympathetic innervation to the heart.  These come off the thoracic nerve roots at levels T1 thru T4.  This would involve thoracic surgery [invasive chest cavity surgery], something I would dearly love to avoid.  They have discussed the possibility of air ambulance to Mayo Clinic [in Minnesota] for that.  I'm way reluctant to take her away from here.  Please pray that we don't have to take her away from Dallas.  Love to all, more to follow if you wish.  Karl and Betsy. 

Rest

My deep apologies for the delayed update. I keep getting distracted by people wanting updates. :) I will tell them to check the blog from now on so I can get information out as much as possible.

Mom has been resting today. She is more heavily sedated than yesterday in measures to keep her heart calm and rested and to bring it out of distress.

This morning Mom said she wanted a blessing from Elliot and Jay. At about noon, they went to her room to give her a blessing and to deliver the sacrament to her. Dad had been preparing her for the visit, but as they arrived, her heart went into tachycardia and they had to leave. The very positive news about this episode is that she did not fibrillate. She was able to calm down enough before it happened. That feels like progress.

We are not able to see her right now, but we are getting occasional updates from our dad who will not leave her side.

She has expressed a strong desire to live. This is an immense relief. Mom's early death has been a fear we children have felt for many years. It is a relief to know that she wants to stay with us. And we are hopeful she will.

Thank you for your notes of love. I will make sure she gets them. You may continue to send them. I will let you know of her response as she becomes able to hear them.

I must also say that your notes to her (as we have been receiving them) are of great comfort to me, my dad, my siblings, her siblings, and her parents. Knowing how much you love her and are praying for her is an indescribable blessing to US. Those thoughts of help and hope lift us. THANK YOU. We want to talk to you individually, but that is currently a logistical challenge. We hope the Spirit conveys to you an overwhelming sense of our gratitude, since we are limited by imperfect words to express its depth and scope. We cannot describe the power your thoughts and words and news of your prayers have had in lifting us into hope. We love you. And thank you.

Those of you attempting to reach us without blogs or Facebook can do so at eliseneville(at)gmail(dot)com.

From my Dad:

We children received this text early this morning and he asked us to pass it on.

Betsy had a good night. No ectopy to speak of. Last shock by defib was 11pm Saturday night. She's responsive now, asking for food. She obviously benefits from a quiet environment. I know she would love to visit with any and all, but it is literally life threatening right now. Any emotional stimulation sensitizes her heart to catecholamines that put her into lethal arrythmias.  Will update you as she becomes stable enough to receive visits. Thank you so much for the love you have shown her and our family.  Her medical situation is somewhat unique. Usually people with this extent of problems with rhythm have serious cardiomyopathies [heart muscle disease] or coronary artery disease [clogged arteries]. She has neither. Her heart is quite strong, and her coronary arteries are clean as can be.  We are not sure why she's this way, but are hopeful that with a little time, she can return to a nearly normal life.

If you want to offer support to my mom, your prayers are doing it. But you can also comment on my blog or send me a facebook message to her. We will be compiling those today (and additional times throughout her hospitalization) and giving them to dad to read to her. I know she appreciates your love.

Earlier this morning.

Setbacks.

She seems unable to cope with stimulation while awake. Her heart has fibrillated about 15 times in the last hour. They have sedated her again to prevent the fibrillations from recurring.

The hope is that with enough rest, her heart can relax and the continuous fibrillations will stop.

If not, they will consider more serious treatment. More invasive surgery.

We are hoping for her heart to recover on its own without any additional surgery. If you feel so inspired, please include that in your prayers.

We have heard of many people praying--people who love Mom and haven't seen her in years. We are so grateful for them. We are so grateful to know that we are not alone in our concern and love and adoration for her.

Thank you.

Your continued prayers

are much appreciated. As I was talking to her a few minutes ago her heart stopped, the implant defibbed her, and her heart stopped again, implant defibbed, etc. It was terrifying. I left the room. I'm afraid I was exciting her.

Thank you so much for your prayers. We can feel them.

I have this on my phone. And it's nicely distracting. And lovely. http://www.vimeo.com/18231148

Coming to.

Mom is slowly waking up. Hallelujah. And although I am relieved, there are still concerns. Her heart irregularity is continuing. That needs to stabilize. And she's not fully conscious yet. I think this was really hard on her body.

Thank you

For your prayers. They will be trying to wake her up early tomorrow morning. Or later this morning I guess. She seems able to hear us. Especially dad.

Pray.

Mom had a successful surgery this morning to implant the defibrillator. When they tried to wake her up, her heart stopped. The defib started it again, but then it stopped again. She was in a continuous state of heart stopping and starting. They attempted this 6 times.

She is now in a sedative induced coma. It is not good. We are going to see her.

Please pray. Pray with all your might. I beg you.

Typical Betsy

Well, minus the tubes and gown and lying down parts.

To Life

My mom's heart stopped this morning.


Did reading that make you sick? My stomach churns every time I've said that to myself today. 


My mom's heart just. stopped.


She had gotten out of bed to go to the bathroom. She returned to bed, said something to my dad, and when he responded, she just... I don't know... didn't say anything.


I don't know how you know that the person lying in bed next to you who was okay a second ago has just experienced cardiac arrest before your eyes, but this is the point where I say Hallelujah for a father who is a physician bordering on paranoia (a condition he refers to as "complete awareness"). And I thank Heaven that he happened to be home (not on call like he usually is). And in bed too (gosh, what if he'd just happened to get up and make himself breakfast?). She's still alive because of him (and the 5 minutes of chest compressions he performed before the paramedics could make it with a defibrillator).


If you know my mom, you won't be surprised to learn that she's more chipper than ever, laughing it up, only annoyed that she's strapped to a hospital bed.


I'm sure that's part of the reason we've had dozens of people concerned for her welfare. They love her. 


If you're among those people, she's going to be okay. 


Tomorrow they'll install an implantable cardioverter-defibrillator to prevent this from happening again. (Yes. My mother. The super-fit 48 year-old with a pacemaker.) After tomorrow, I'll be able to sleep again.