Saturday, February 25, 2012

Kolbers


I'm not always Kolby's favorite person.  I make him do chores and read books and eat all of his dinner. I make him keep his room clean and go to bed at a certain time and he has to do his homework.  But even with all those things that he doesn't like, he would never even think of yelling at me or be sassy with me.  He's a pretty good kid.

This week we had some alone time together. I took him in to the doctor for a followup appointment, and also to regroup his allergy/asthma medication.  Afterwards, I bought him a chicken burrito at Taco Bell and he helped me do some grocery shopping.  I always like spending one-on-one time with my kids, but the afternoon Kolby and I spent together was really great.  I love this kid, even though he seems to be my most challenging one.  He has a lot to offer, and I'm proud of who he is.

Friday, February 24, 2012

Pressure Highs & Lows


Yesterday Kimble had his cardiology appointment. It's been four months since his last visit, and it felt like forever. Most especially the last few weeks, when he started having blue lips on a frequent basis.  I was really anxious for the results of the echocardiogram (which is done at every appointment) to either calm my worries, or else prove that I was validated in my worrying.

It calmed my worries.  Kimble's heart is doing great.  The doctor didn't see anything concerning.  Kimble is thriving.  What great news.

So why the blue lips?  Here is what's happening with Kimble's blood flow: He has a system regulated with high pressure and low pressure.  The low pressure bloodflow is coming from the superior vena cava (SVC) that was rerouted from taking the blood to the right heart, and since his last surgery, has been taking the blood directly to the lungs, bypassing the right heart.  The high pressure bloodflow  is coming from the right heart, via the pulmonary valve/artery (technically Kimble doesn't have a pulmonary valve...it's just a ballooned-through opening) and going to the lungs.  This is all the bloodflow from the bottom half of Kimble's body.

What is happening, is when the blood coming from the heart pulses through the pulmonary artery and into the lungs, because it is flowing on high pressure, it makes the low pressure blood (coming from the upper part of the body via the SVC) wait it's turn. Thus, there is a pause, or dip, in the waveform, and as a result, the upper body could show signs of low saturation, thus causing Kimble's lips to turn blue.


The 'Ah-ha' moment, for me, came next.  Our doctor said that because there is plenty of bloodflow coming from the right heart (enough to be a bully and cause the low pressure bloodflow to wait it's turn) it confirms the fact that Kimble's right heart has grown sufficiently to handle (and dominate) the bloodflow.  Could it handle all of his body's bloodflow?  Our doctor believes that is the next step.  Because the main goal for Kimble is to have as much of a chance at a normal life as possible.  This means  that if there is an opportunity to give him a better functioning heart, we'll do it.

Now that Kimble's heart has had two years to grow, we see remarkable potential.  Remember before he was born...his right ventricle basically had no blood flowing through it, and thus it was unformed.  It was the hope that if they tweaked a few other things, and got blood flowing through it, that the ventricle would relax and the muscle would grow, and it would be capable of pumping blood.  Well, that is where we are now.  His heart measurements are within the normal parameters.  Truly a miracle.


We still have the stubborn tricuspid valve, which is the opening between the right atrium and the right ventricle.  It was this tricuspid valve that was the basis for all of Kimble's heart problems, since it was so defective that it didn't allow blood to even get in the right ventricle.  Things have changed, but that valve is still a sticky situation.  The doctor's will have to work around it, but they think there is a solution.

For Kimble's next surgery, they want to REVERSE the procedure they did the last surgery, which was rerouting the SVC from the heart and putting it directly on the pulmonary valve going to the lungs.  This procedure was called The Glenn.    A reversal of The Glenn isn't commonly done, supporting the fact that Kimble is indeed, unique.  Once reversed, all of Kimble's bloodflow will be pumped the same way yours and mine gets pumped.  No rerouting.  Now, his heart isn't perfect like ours is.  It still has its defects.  But hopefully it'll be workable.

This is scary to me.  Why?  Because it would be putting a lot of pressure on his defective heart.  If his heart can't handle it, he would go into immediate heart failure.  Or, suppose he does fine, but the bigger and older he gets, and more active he gets, will there come a time when it's just too much for his heart to handle?  I'm worried that this will happen.

Of course, we can't see into the future, so I need to have faith that the best thing will be done.  There are steps the surgeons can take, in helping to alleviate the pressure buildup, and so on.  I know they will do everything they can to give Kimble the best possible chance for an active and healthy life.

Here's the plan.  Sometime towards the beginning of fall (September-ish) we'll have Kimble undergo some Cath-Lab procedures to get all the accurate measurements, flows, pressures, etc of his heart, as well as 3d MRIs and the such.  The results of those tests will determine if his heart would handle the reversal, and how they will go about keeping the pressures stable.  Then, we will decide on a date for his surgery.  The good news is, that unless there is an emergency situation, we get to pick when this surgery will happen.  We can choose October or November or December or whenever it fits into our schedules.  Once again, I get to plan and prepare..which I like (and need) to do.

This is hard for me.  Going through all the emotions and trials relating to Kimble's mortality.  Ugh..  So hard.  But we'll do it.  Because it needs to be done.

Thursday, February 23, 2012

Diary of the Worst Kid

Keaton likes to write me letters.  I like getting letters from him too.  Sometimes he'll be right next to me, but will write me a letter to ask for something.  Perhaps it's because he's timid, and it's a non-confrontational way to ask for something. Sometimes his letters will say "Mom, can I go out to the garage and work on making a shield?"  or "Mom, there are no more pencils in the house.  Check 'yes' or 'no' if you are going to get more."  Most of the time, however, his letters are to tell me that he is sorry for something.


Yesterday afternoon, when the kids were done with chores and homework, I let them go outside to play for a bit.  We have a longstanding rule, that they are only allowed in our front yard, during play time.  The neighbor kids and their families know this rule too, and so everyone usually plays in our front yard.  I do this because it's the only way I can keep my kids safe.  I don't  need them hiding out in someone else's garage, or corner of their back yard, learning through whispering words things that are inappropriate, or things I don't need my kids hearing from other kids.  I don't have to worry about strangers or other adults, or big siblings of neighbor kids doing any harm to my kids.  It's been our rule forever, and the kids know this.

On occasion, I'll let the boys ride their bikes around the block, and sometimes they can all go as a group to the school park and play (which is barely a block away).  However, times like this require permission for each occurrence.

Yesterday, I told the boys they could rollerblade around the block (and they must check in each time they arrive back at the house), but after a little bit, Kennedy came in and said "Can I go to the school park too?"  Apparently the boys had decided to go to the park without permission.  I waited for them to come home (almost an hour later) and sat them down to ask them about their decision.  "Did I say you could go to the park?"  "What is our rule about playing in our front yard, and only in our front yard unless you have permission to go somewhere else?"  "Did you make a wrong choice?"

So unfortunately, they got grounded, and they also couldn't go to cubscouts that night, which is a punishment that had more impact than just being grounded.  They were devastated that they had to stay home from scouts.

When I got back from the church, Keaton told me that he had written me a letter. Then he kissed me and went to bed.  I read the letter right away, and as I chuckled at how melodramatic Keaton was, it made me sad to think that he really believed what he had written.  So I called him back up to talk with The Husband and I about the letter.  Here is the letter, and what he wrote.



Dear Mom and Dad, (that part got cropped out when scanned)
I  never knew we weren't allowed to go to the school park, but since I'm grounded, I'm grounded right?  Well, I also wanted to tell you I'm the worst person in your life.  -Keaton.   P.S. Keaton Taylor Nunnelly, worst kid on earth.  Reward:  All the money on earth.  P.P.S.  I'm not going to talk if you send me to you.

So we had him come back up, and we explained that he isn't the worst kid on earth, but that he simply made a bad choice.  Then we clarified that he did indeed know that he wasn't allowed to go to  the school park (he agreed) and that he shouldn't go to bed thinking we hated him, but that we love him and are trying to teach him that there are consequences for poor choices.

He had remained silent this whole time, so I asked him if he really wasn't going to talk to me, as his P.P.S. indicated.  He said "morning", so I guess that meant he'd speak to me in the morning.  Then, with a hug and a kiss from me, and a tickle from his daddy, he went to bed.  Then Heath and I laughed to ourselves about "worst person in your life...reward: all the money on earth" statements.  Oh, these kids.  We sure do like them, even when they get punished, and maybe just a bit more, after reading this letter.

Monday, February 20, 2012

Ear Infections, Screaming, and Kisses


Poor Kimble has been battling some sickness lately.  Last week he developed a terrible cough and he had a fever.  He was cranky and needy and so I took him in to the doctor.  Turns out, in addition to that, he had an ear infection too.   So we got him started on antibiotics.  After a few days, he feels better now, but boy oh boy is he developing some other issues.

Kimble likes to run away from us, when we call him.  Pretty much whatever we say, he does the opposite.  His favorite hiding spot is underneath the kitchen table, which makes it hard to grab him unless I get under the table as well.

He wants to throw a fit over everything, which usually results in him whacking my lip/jaw/teeth/eye/nose/cheek/head with the back of his head. Ouch.

Kimble likes to torment Georgie Kennedy. It's almost comical to watch how he tries to harass her.

Throwing.  Throwing Throwing.  He now wants to throw everything, and it makes it very hard to keep things from getting broken.

Relating to throwing, church functions are so hard to endure.  This Sunday, he took his train toys and threw them across the pew, and I'm not sure how the nice lady sitting in front of us didn't get hit and require stitches.  She must've had some guardian angels working for her that day.  I can't believe the trains didn't hit her.  

Screaming...oh, the screaming.  He wants to yell over everything.  It's hard. I completely understand that he struggles with speech, and gets very frustrated that he can't communicate what he wants..but the screaming is really really getting to me.

Oh, but then comes the kisses. Kimble likes to give me a kiss each night, as he's getting tucked into bed.  He even makes the perfect kiss noise as his lips touch mine.  He smiles sweetly, and then he puckers up again for another kiss.

Hugs.  Kimble gives the best hugs when I'm getting him dressed.  He squeezes me at every opportunity, as we are putting his arms through his shirt sleeves, or pulling up his pants, or zipping up his Mr.Roger's sweater.  I love those squeezes.

Meatloaf. Meatballs. Meatloaf. Meatballs. He loves them.  "More!  More!" he says.  Then he gets them and he says "Yeah!"

"Ma!"  "Ma!"  He yells for me throughout the house.  I love hearing it.

He no longer is satisfied sitting in his high chair. He wants to eat at the table now with the rest of us.  He doesn't want a booster seat either. He's trying to be such a big boy.

Kimble tells everyone "hi" that he sees, and when they reply back, he'll begin a long jibberish conversation with them, which leads them to stare at me and say "I didn't understand any of that, but he sure does like to talk!"

I don't clip Kimble's fingernails.  It's curious to me.  They simply don't grow long enough to require trimming.  Maybe a heart thing? I don't know.  However, it's nice not having to battle the stillness that trimming nails requires.

The Backyardigans has become his most favorite show, even above Dinosaur Train.

He is learning the sounds that animals make, so when we say "Kimble, say Dog!"  he'll reply with a "ruff ruff".  He loves to see the trains go by, in our town, and always yells "Choo choo!"  He also has quite a few signs that he says, in sign language, "thirsty" being the most commonly used. He loves to drink water.

Kimble's next cardiology appointment is this week.  I'm most interested to see if there has been any changes.

Sunday, February 19, 2012

Saturdays

Saturdays are for...

Deciding to go out and rake up the back yard, even if it is snowing, because you are so excited to help make a garden this summer.


Getting a big stack of new books from the library, and spending half  the day reading them, forgetting about the fact that you are grounded from the television.  Now that's a good book.


Looking at your kindergartener, and realizing that all of her pants, which were just bought in August, are a few inches too short for her.  Wow.


Eating cereal on the kitchen floor, while lying on your belly, is really the best way to pass the afternoon away.


Taking a bike ride around Garden of the Gods, even though the wind made you feel frozen.


Saturday is also for folding stacks and stacks of laundry, which is what I did.  So.much.fun.

Tuesday, February 14, 2012

Valentine's Drawing


Kennedy drew a card for her teacher.  I'm not sure if it was meant as a Valentine's Day card, or just a card because she idolizes her teacher.  Either way, she worked very hard to produce the perfect drawing, and write all her words on her own.  She spelled "Mrs. Havens" as Misis Havins.  She also wrote "Look on the back" and when you turn it over, there is another picture of her and her teacher, drawn with love.

I don't remember much about my Kindergarten teacher.  The only thing I remember, is not making it to the bathroom one day, and as a result, I peed my pants.  During story time, when we were all supposed to be gathered around the teacher, sitting quietly on the floor, I sat clear across the room.  I didn't want anyone to know I had wet my pants, and so I figured nobody would smell anything if I was far enough away.  I remember the teacher coming over, encouraging me to join the rest of the class. I vehemently shook my head no, and stayed firmly grounded where I was. I was so sure she didn't suspect anything...that is, until I got home, and my mom met me at the door and ushered me to the shower.  I couldn't figure out how when I was so sneaky with my teacher, and yet my mom knew the instant I got home.  Moms are pretty smart.

Friday, February 10, 2012

Donating Blood

This week is National Congenital Heart Defect Awareness Week.  A time to recognize and learn about the number one cause of death in infants, or the fact that one in one hundred babies are born with a congenital heart defect, which puts CHD as the most common birth defect.  Although, unless you have someone close to you that is born with a CHD, you don't really know about it.  Why?  We don't have as much funding as some of the other illnesses and defects have.

In honor of Kimble's life, and all the other CHD kids, our Mended Little Hearts group has offered many blood drives this week.  Today, I got the opportunity to donate blood, just like last year.  Today, I saved a life.  Kimble has received many blood transfusions in his young life, the first time actually receiving his Daddy's blood after his first heart surgery, and we are very thankful to the nameless people who donated the blood that Kimble received additionally.  It's such a small act of service to do, but one that makes a huge impact.

Kimble's picture (along with a small handful of other CHD kids that are in our heart group) was up on the wall in the bloodmobile, as well as on posters in booths, to share more information about CHD.  It helps to have visuals of kids that are CHD survivors.  Kimble's story is also made available, in a longer format, to personalize things a bit more.  After I gave blood, I took a picture next to Kimble's picture.  The words on his poster read:  My name is Kimble.  I love meatloaf.  I like to play outside.  I have had many heart surgeries, and will have more.


Many people question the severity of Kimble's heart defects.  It's hard not to, when you see such a healthy and active boy in front of you.  With CHD, there is a variety of defects.  More than two hundred.  However, at last night's parent support meeting, we had the head of our hospital's cardiology unit come and speak to us.  I learned something very interesting.

He pointed out how numerous heart defects are under the CHD name, but he had seven specific heart defects that were labeled "Critical".  This means, that if one of these seven CHDs go undetected in a newborn, and the baby went home from the hospital undiagnosed, that the baby would die before you would realize something was wrong with him/her, and there would be no time to get back to the hospital for treatment. Pretty intense.

Then the doctor brought up a list of the seven critical congenital heart defects.  Guess what?  Kimble had three of them.  He had three out of the seven critical heart defects.  All you need is one, to be deemed critical.  He has three.  All of Kimble's defects are on the critical list.  If that doesn't slap you in the face....

So, yes.  Kimble has heart defects.  And yes.  Kimble's heart defects are under the critical status.  He would not have survived, if his defects had gone undetected.  He would have died.  I'm so thankful to the initial ultrasound tech, who saw that something wasn't quite right, and said we needed another ultrasound.  Then, I'm so glad that she saw irregularities with the heart, and further sent us for another ultrasound, but this time with a cardiologist.  She helped make the first diagnosis, which led to Kimble's official diagnosis, which led to him being born with a team of doctors already prepared to keep him alive.

I have a lot of gratitude for everyone involved in keeping Mr. Kimble alive and healthy.  If I can do even the slightest bit, in helping keep someone else alive too, then it's the least I can do.

Wednesday, February 8, 2012

Yo Yo Weather


Our weather in Colorado is pretty crazy.  One day it's 10 degrees and snowing, and the very next day it's 60 degrees and lovely.


But I love it.

Tuesday, February 7, 2012

Normal Fluctuations?

As a followup to the last post, I called our cardiologist's office and had them leave a message for our doctor to call back. As he was out on consults most of the day, it wasn't until 5pm that I spoke with him.  He asked the normal questions:  Does his breathing rate change when he's having these episodes?  Is there anywhere else on his body that also looks blue?  Is his activity level changed?  Is he struggling in any other area? 

The answer was no.  Nothing is changed except that he suddenly has blue/purple lips.  Time of day varies, as does the activity we are doing.  Sometimes he's playing with toys.  Other times he is watching a cartoon.  Some days it's early morning, and other times it's in the afternoon.

The only thing that worried  me, as I explained to our doctor, was that it was happening more frequently.  I use to never see his lips blue.  Then, two weeks ago, I saw his lips blue and they stayed that way for at least half an hour.  Then we began to see it more frequently, and sometimes a few times a day.

Our doctor said, based on his questions, that it seemed to be a normal fluctuation.  Sometimes circulation is better than other times.  Because he doesn't change activity level, and his body isn't turning blue, we should be ok.  We are fine with waiting until next week's appointment, to have his regular checkup.

On one hand, I feel so much better.  I really worked myself up into a mess yesterday, thinking that things were going wrong and how utterly unprepared I was to have Kimble back in the hospital again.  All the emotions that I prefer to keep bottled up on a daily basis totally swung out into view.  I had a few friends that gave me words of comfort, but the bottom line was that it was a hard day.

On the other hand, I still feel like this is leading towards problems with Kimble's heart.  Blue lips may be ok sometimes, but at the rate of frequency, I think it's a sign of things to come...and they might come sooner than later.  I'm trying not to jump the gun, but as someone who needs to be completely prepared for whatever may come, I'm now in alert mode.  I hate alert mode.

Thank you for your thoughts and comments on the previous post. I know so many people out there, many who I've never met, have Kimble on their thoughts and prayers as well.  I appreciate that. I makes me feel comforted. Thank you.

Here's a picture of me and Mr. Kimble, before I left for Jury Duty this morning.  I still refer to him as my baby, but he's getting so big!

Monday, February 6, 2012

Blue Lip Special

Mr. Kimble has been worrying me lately.  For the past few weeks, he has had times where his lips are blue, or purple.  It started off a few weeks ago as happening once.. then days later, it happened again/  But for the past week, it's been a daily occurrence, if not multiple times during the day.  It doesn't happen at a specific time, and it doesn't affect his activity level.  He doesn't seem struggling for breath, and the only thing different, is that his lips look purple.

At every single appointment we have with the Cardiologist, we hear the same question get asked: "Has he had any bluish tint to the lips and/or fingernail beds?"  Now, unfortunately, I have a different answer to the question.  Yes. Yes he has.

The thing with cardiac kids, is that they are either doing great, or they are doing bad.  There really isn't an in-between phase for them.  The scary thing is, this happens fast. One day they are fine, and the next day they could be in cardiac arrest.  The sign of blue lips means that not enough oxygenated blood is making it through the body.  Because Kimble's blood route is altered, this should be a big flashing neon light that says to us:  The heart isn't functioning well enough.

It has me worried enough that I have called our Cardiologist to see if we need to bring Kimble in earlier than our set appointment scheduled for next week.  I really hate to see his blue/purple lips.  It scares me.  Big time.


I took this picture a few weeks ago, when he first presented with blue lips.  It didn't transpire the greatest, in the picture, but they are pretty dark purple in real life.

Friday, February 3, 2012

Save10

Good through Feb.27th.  If you have wanted to buy my cookbook, and haven't yet, Blurb is having a special where you can save 10 bucks on your order!  Just put in the code SAVE10. Very cool.