Life is Precious: Worth Every Penny

WOW! It’s been a LOOOOOOOOONNNNNNGGGGGG day (kinda like this post you are about to read). You may have seen my Facebook post at 3am this morning. I woke up and could not go to sleep because I was afraid I would either sleep through the alarm or it wouldn’t go off at all. So, I just lied in bed waiting until 5:15.

We arrived at the hospital at 6:05, received our pager disk, you know, the kind you get a restaurants that blink and vibrate when your table is ready and waited. We were called up to the 18th floor around 6:20 for Nathan to get situated in the holding area before surgery. We were the first ones to check in this morning at the desk. We were also the first ones to be sent to the holding area. However, we were the last ones to go back into surgery.

Yesterday we were told that we would have a 7am start time. When we got to the holding area, it was changed to 8am. As we waited, the anesthesiologist came to visit and advised that we would start closer to 8:30. There had been an emergency surgery overnight for a child and they were getting the room ready.

At 9:30, I finally asked our nurses what was taking so long. they told me that it shouldn’t be too much longer. The emergency surgery was just finishing up (more on this later). Finally, at 10:10 the surgery team came back, gave Nathan his first round of anesthesia and whisked him away (4 hours late).

We knew that we would be receiving updates every 1 1/2 to 2 hours. Mika and Mary, our two awesome nurses, were the ones to give us updates throughout the day. The first update came at 1 1/2 hours in as planned. The news was good. There was less scar tissue than they had expected around Nathans heart from his previous two open heart surgeries. This should make things much easier to work around.

Update #2 came about 2 hours later. Mary came to visit and told us that the esophageal ECHO (you can read about that here) showed what they had expected. They put Nathan on a heart-lung transplant machine so they could begin working on the 2 valves they were repairing. As we were chatting with Mary, Dr Mackenzie was beginning the process of “installing” Nathans Pulmonary Valve and Tricuspid Valve.

Our next update was 3 hours later, we spoke with Mary again. At this time they were closing up Nathans sternum and stitching him together. They needed to see results of a 2nd esophageal ECHO before they were completely finished. We should see Dr. Mackenzie shortly.

About 45 minutes later we were called in to see Dr. Mackenzie. He had excellent news. Everything had gone well. Nathan was moved into ICU and we were allowed in to see him around 8pm. He was sleeping well and under sedation and anesthesia. We decided to leave for the night to get some rest ourselves.

While we were in the waiting room today we encountered a very distraught mother. She was between dazed confusion and hysterical crying. We were unsure what could be so devastating.  The longer we waited the more we heard about her situation. (you really can’t help over hearing things in a very large open waiting room via phone conversations) What my Mother-in-law eventually discovered is this was the mother of the child who had overnight emergency surgery and had pushed Nathans surgery  back by 4 hours.

As the hours passed, thing we more dire for this child. She was a twin and only 5 days old. She had developed some irregular breathing overnight and her father called 9-1-1. She was rushed to TCH and was immediately rushed into surgery. She had blood in her lungs and several infections. The doctors worked on her for several hours and were not able to make things easier for her. She wasn’t going to make it through the night.

My mother-in-law and I witnessed the christening of the healthy male twin in the waiting room of the hospital. The priest also performed a christening on the baby girl shortly before her death. The entire family had made their way to the hospital today to pay their last respects to a tiny baby.

I had mixed emotions as the day wore on . . . . I was so very happy that Nathans surgery was going great and he was progressing as expected. Each time I walked out of the consultation room with a smile on my face, I felt guilty as I looked upon the family that was losing a life as each minute passed. It was hard for me not to be happy but, to openly display my emotions in front of them, while they are experiencing a great loss, was not fair at all. I didn’t know what to do, except be myself.

Please pray for this little girl (only 5 days old) and her family. I don’t know their names. I doubt we will see them again.

After witnessing this family’s worst nightmare, my Mother-in-law shared with me an experience she had when Nathan was just 2 1/2 weeks old, of not knowing if Nathan would make it through his surgery. She had no previous knowledge of his heart condition before he was born. It was not until several hours after his birth and nurse passing on info she wasn’t supposed to pass on, that she became aware of Nathans condition. It was at this time when she realized and understood she had to accept the Lord’s will.

Life is precious . . . . worth every penny

Pre-Op

Today was pre-op for Nathan’s valve replacement surgery. We arrived at 8am and finally left at 12:45. Everything went as expected, almost. . . . . I’ll get to that in a minute. We had our own special room for the duration of our stay today.

First, we met with Jannelle, our liaison throughout the day. She is really nice and helpful and guided us through all of our different meetings. She sent us to the basement for labs/blood work. After the wonderful journey to the depths of TCH, we returned to cave, er Congenital Room 1 (our special room).

Next was the Social Worker, asking typical social worker questions. I haven’t really figured out why we have a social worker. I guess it’s just one of the services the hospital offers.

Third was Tameka, she is Dr. McKenzie’s assistant. She is adorable. You can tell that she really enjoys her job, she has a wonderful attitude and smiles all the time. She informed us of some of the details of Nathan’s stay and some post-op instructions. As we were talking with her, the subject of a Holter monitor that Nathan wore in March came up. As it turns out, it got lost in the mail on the return trip to TCH. Nathan HATES wearing these monitors. It is cumbersome, itchy, annoying, etc. So  . . . guess what he’s wearing today???? Yup, a Holter monitor, all because I opened my BIG mouth. I’m pretty sure if I hadn’t said anything about it no one would have remembered that it got lost.

We even had this cute young girl bring in a binder and shoe cute pictures and tell us how our day would go tomorrow. I know that she meets mostly with children solely based on her presentation. It was very informative and well organized but, very much for a child’s level of understanding. She brought a doll that displayed what Nathan’s incision will look like and explained all of the different locations that Nathan will have things protruding from and the purposes behind each of the protrusions. At the very end, she offered to take us on a “tour” of the different rooms and places we would be visiting tomorrow. We politely declined the tour as we have already been to nearly every location she was going to show us.

Our final meeting with Jannell provided the most important info of the day. WHAT TIME DO WE SHOW UP???? We are to arrive at TCH at 6am for a 7am start time. (I imagine that they won’t take him back until around 9). Nathan will spend much of the first 2 days in CVICU (CV=cardiovascular). He will get to rest Friday. Saturday will begin his recovery, he has been directed by Tameka to begin taking walks and sitting up in chairs over the weekend. If he doesn’t follow this wonderful advise, he could end up with pneumonia.

As we were leaving the 20th floor today (TCH Cardiology Clinic) I noticed a grouping of sings/banners stating all of the accolades the TCH has been awarded over the years. The two that were most significant to me: US NEWS & WORLD REPORT voted TCH the #3 of  the 50 Top-Ranked Pediatric Hospitals for Cardiology & Heart Surgery. TCH has received this honor for the 3rd year in a row. the sign just hasn’t been posted. I am so happy that we are able to have such talented physicians at our disposal. Many people we have talked to over the years don’t understand why we travel so far for medical care. Hopefully, this will shed some light on why we believe in having excellent surgeons.

Nathan, being born in Houston, was very fortunate to have his very first open heart surgery performed by Dr. Denton Cooley. You can read about Dr. Cooley’s impressive career here and here. I believe that having Dr. Cooley perform Nathan’s very first surgery was integral and essential to his survival as an infant. Nathan started his life with the best surgeon in the world. Why not continue that tradition? Why not have the best do their best work? Nathan deserves the best care he can get, that’s why!!!!

Girls Camp 2011 – Day 4 “It’s over already?”

Day 4:

WOW!! It’s over already??? How can 4 days go by so quickly??? I started the day by taking a few of the girls back to our secret spot to see the sun rise. It was beautiful!!! What a way to end a great week.

Sunrise on the lake

Kim, Jenni and Izzy

 

 

 

 

 

 

 

 

 

We had to break down camp, take down all the tents, find homes for all the miscellaneous stuff that ended up on the picnic table, take down our Christmas lights and the clothes line and pack it all into the trailer.

time to go home

Before we got completely back to reality, we took the girls boating at a different lake (closer to home). We had a picnic lunch and lots of trips on the tube. I had so much fun with these ladies. I must admit that girls camp is better as an adult leader though!! Can’t wait to do it all again next summer. Thanks be to all of you for a wonderful week.

Girls Camp 2011 – Day 3 “The Hikes”

Day 3:

I have mixed feelings about “day 3”. It was the hardest and the easiest day at camp. The hardest because we had to wake up super early to go on our hikes. Breakfast was portable and easy. We also got a bag of snacks and a bottle of water for hike. Levels 1, 2 and 3 took a hike. Level 4 got to sit it out since they had a rough day on Monday.

I was assigned to Level2 girls all week so I got to go with them on their hike. This is our group before we started.

Level 2 girls and YCL's

Why is it the hardest? Level 2 girls were supposed to do a 5 mile hike, yeah right!! Since we had been experiencing 100 deg temps all week, the stake leaders cut our hike to 2.5 miles. We walked from the far north side of our camp area to the picnic area where my “stump” is located and back.

Avery and Kasenya on the Level 2 hike

For the Beauty of the Earth

 

 

The theme for the week of camp was “For the Beauty of the Earth”, after one of our hymns.

 

 

Why is it also the easiest? We got back so early from our hikes, we had a couple of hours to sing songs and play games at our camp sites. It was so fun to hang out and relax and get to know the girls better. Our group had such a great attitude all week long even though we had a less than desirable  situation i.e. sleeping in tents, 100+ temps, no showers, porta potty’s for bathrooms, no a/c, etc. We received several compliments from stake leaders about our girls and their great attitudes.

There is a really cool trail that leads down to some small cliffs near our camp site. I took a few of the girls that wanted to go. It was so pretty there. They were skipping rocks and enjoying the view.

Jenni, Izzy, Kim and Tanille at our secret spot

We had a baked potato and salad bar for dinner. After our evening flag ceremony it was testimony night with our Bishopric members. Before the testimony meeting, we had a 5′ long banana split for desert. Holy cow, I think that is the largest banana split I have ever seen.

Lined up at the "trough" for desert

5' of ice cream 🙂

There wasn’t much left when they finally finished eating.

Testimony meeting was great. We got to hear each of them express their love for their Heavenly Father and the Gospel.

 

 

 

 

 

Girls Camp 2011 – Day 2 “OMG, Sis. Andrus”

Day 2:

Surprisingly, it was pretty dry when we woke up. We were supposed to eat breakfast as a stake but, they didn’t cover the fire wood so, it got wet in the storm. We ate french toast made on our camp stoves we brought. Glad we were prepared!!

We did our normal morning stuff, flag ceremony, songs, certifications, etc. Lunch was served almost on time, they were getting better.

Our afternoon activities consisted of 1hour free swim, 1 hour swim, 1 hour crafts, 1 hour at the ball field. Today our craft was survival bracelets. It was kinda fun but, I am really bad at it. Some of the girls were really good and caught on quickly (Avery).  Our activity at the ball field is “Kiddie Pool Kick Ball”. OMG!! Our girls loved this game, especially the “Slip-N-Slide” to home base.

The preparation

Jenni sliding into home plate

 

 

 

 

 

 

 

 

 

There was supposed to be a “homemade shower” contest. We are the only ward that had a fully functioning home made outdoor shower. Jenni was the first to test it out since she was the oldest and one of three that had been there the longest.

Model your feet

For dinner that evening we did Hobo dinners. They were good!! After dinner we had to fit in our skits from Day 1, devotionals from two great leaders and “Singing Trees”.

Sister Andrus spoke on Attitudes.She did an AH-MA-ZING job. She even took off her shirt for us. LOL

Attitude is everything

Our skit was GREAT!!! We did a “therapy session” based on our camp experience. Take a look at our AWESOME video here:

http://www.facebook.com/video/video.php?v=10150769165360722&oid=100607660023237

When I first heard about the “Singing Tree” idea, I have to admit, I thought it sounded REALLY cheesy!! We chose the song “Young Women Holding Hand Around the World”. The concept is each ward surrounded a tree (in the dark), turned on their flashlights pointed into the sky and sang their song. Once the song was complete, you turn off your flashlights and another ward starts. As each group sang, the spirit was so strong and it was an awesome experience. It was as though the trees were glowing with the spirit of God!! WOW!!!!!!!!

Girls Camp 2001 – Day 1 “What Stump”

Day 1:

Knowing we had a LONG day ahead of us, we met at 0ur church building at 6:45 am on Tuesday, June 13th. We only had 8 girls going up that morning since 3 had gone up the previous day. Breakfast was donuts, sausage kolache’s and juice.

Got on the road about 7:15. It should have been a quick 1 hour trip to Lake Murray in Oklahoma. But . . . our directions were awful and it took about 1 hour 45 minutes to get there. One and a half hours in, we thought we had gone too far and decided to turn around in a picnic area. I didn’t look where I was turning I just knew I didn’t want to drive all the way around the picnic area just to get back out. As I started to turn, my co-pilot (Michelle Scott) asked “Are you going to run over that stump?” As I asked “What stump?”, I realized what stump she was talking about. OMG!! The stump was huge!!!

As I finished making my U-turn all I could see were people in the other 2 cars laughing hysterically as they watched us dive over the massive stump. One of the girls in my car hit her head on the window because it was so rough. SORRY!!

“What stump” became our Ward theme for the week. LOL!! It doesn’t look like much here but, it was easily 4′ across.

What stump?

Once we arrived, we started to put together our camp. We had the BEST camp site in the whole area! It was wide with lots of trees. We began set up camp in the near 100 deg heat. We had 11 girls, 4 leaders and 5 tents. Everyone pitched in and helped, camp went up quickly. We had plenty of time to get everything together before heading up for the morning flag ceremony.

Izzy and Sis. Ritchie putting up our clothes line.

The girls separated into levels and went to do their certifications.

Lunch wasn’t served til around 12:30. With such a large span between breakfast and lunch we had some girls that didn’t feel well. After lunch, we were blessed with 2 straight hours of water time. Hello lake, we love you!! Being able to spend so much time in the water helped combat the heat.

Dinner was separated into levels. Each group was to make Dutch Oven Taco Soup. We didn’t eat til around 8. Again, a large span between meals isn’t good. We had some girls not feeling well. Two of our amazing leaders made a trip to Wal-mart for snacks for the rest of the week. We can’t be losing girls because of hunger.

That night we were supposed to perform our skits. Plans quickly changed as a thunder storm approached. We were all banished to our tents by 9pm to wait out the storm. As the rain started, one of our girls tents sprang a leak. Thanks to a quick thinking leader (Richele Ritchie) they were mostly spared. She put an easy-up awning over the tent so they wouldn’t get soaked.

Girls Camp 2011 – Preface

Girls Camp is one of the things I liked best about being a “Mormon” when I was a teen. It meant a week away from home with friends (that were a good influence), having fun, swimming, camping, snype hunting, etc. So when I was asked to be Camp Director for our Ward this year, I was totally stoked about going to camp.

Preparations started in March. I was totally new to this calling so I felt completely unprepared and unsure of myself. I had parent meetings to arrange, fund raiser to organize, and equipment to locate. I had some experience with these girls previously so meeting with them and their parents was a breeze. My family went camping for most of our family vacations when I was a child so, the equipment list wasn’t bad either. The fund raiser . . . that’s a whole other ball game!!! Needless to say, it was a little overwhelming. I started in March and it didn’t end until May (Mother’s Day weekend).

By the time camp actually got here, I was ready for it to be over. However, I was determined to have fun because I used 4 of my precious 10 vacation days to go to camp with these amazing girls. Boy was it worth it!!

Aren't we cute?

Cop-Out’s

I am SOOO tired of cop-out excuses!!! I don’t know about you but, it seems like that is all I hear lately from people. I don’t know why this has suddenly become a trend but, it’s getting OLD.

If you don’t want to do something . . . just be HONEST!!!

There’s a novel idea, HONESTY! Honesty is best for everyone. Quit worrying about hurting someone’s feelings and cut to the chase. You’ll get a lot more respect in the long run if you can “grow a pair” and tell the truth.

I believe the reason people have a difficult time being honest with the themselves and those around them is lack of self confidence. If you can’t be honest with someone else, then you really aren’t being honest with yourself.

My Hiatus

I haven’t posted in a looooooonnnnnnng time. So, I’m going to try to make up for it with a few new posts this weekend. Since I was last on here so much as happened.

April flew by. I was busy putting together details for a church fund raiser, selling pies for Mother’s Day.

May:

• Made and delivered 175 pies for said fundraiser
• Spent Mother’s Day with friends in Houston
• Went to Nathan’s Dr. appointments in Houston
• Went to a Roughrider’s Game
• Had a Stella & Dot / Scentsy Party (it was a HUGE success) I got a TON of free Scentsy and Stell & Dot jewelry
• Nathan started a new job (and he LOVE’S it). Go see him @ Select Comfort in Vista Ridge Mall if you are in the market for a new mattress. It’s the best mattress you’ll ever have.
• More planing for girls camp

June was CRAZY busy too. I’ll talk about that in other posts. 🙂 (notice post is plural, hahaha)

I’ll try really hard not to be gone that long again.

What is Endomitriosis?

According to the Mayo Clinic (http://www.mayoclinic.com/health/endometriosis/DS00289):

“Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would: It thickens, breaks down and bleeds with each menstrual cycle. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

This process can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.”

In some cases, mine included, endomitriosis is hereditary. My mother had it and my grandmother had it. My grandmother had a full hysterectomy at the age of 30. My mom has also had a full hysterectomy. I don’t want this to be my fate. That is why I am working so hard to keep what I have left. I don’t want to take hormone replacement therapy (HRT). I have enough to worry about without adding the side effects of HRT to the mix.

Endomitriosis affects 20% of the female population in the world. Some have more severe cases, others have less severe cases. Unfortunately, I am one of the severe ones. I have “Stage 4” endomitriosis. I don’t know many people who have endomitriosis as bad as I do. I can count on one hand the people I know personally who have had similar experiences to mine i.e. surgery, lupron shots, etc.

Some of the symptoms of endomitriosis are:

• Painful periods
• excessive bleeding
• infertility
• blood clots
• menstural cycles longer than 7 days

Endomitriosis is “fed” by the production of estrogen in the body. This is why I have been on the Depot Lupron medication twice. The laparascopic surgery is done to remove lesions. When my left ovary was removed my ovary had attached to my hip, intestines and my bowel. My ovary was the size of an orange at the time I had it removed. A “normal” ovary is the size of a walnut. My doctor was able to remove most of the lesions with surgery.

After sugery, Lupron shots will continue to remove any remaining endomitrioma. Because it can’t live without the hormone estrogen it “dies” off. Depot Lupron is an injectable medication that induces the symptoms of menopause. I didn’t have a period for 6 months but, I got to experience what menopausal women go through. Each time I took the shots I took them for 6 months. It was not an easy process and it’s also expensive. Each shot with my insurance cost $100 + $20 for the doctor’s visit to administer the medication.

It can only be diagnosed by laparascopic surgery. The only “cure” for this illness is hysterectomy. Pregnancy can give a reprieve from the disease but once the body is menstruating normally, the endomitrioma will begin to grow again. Once the Lupron shot are finished, your body will begin to produce the natural hormones again. Which will in turn produce the endomitriosis again. It’s a never ending cycle.

I have seen the same OB/GYN for 11 years. For six years, I saw my OB/GYN every 3 months for a sonogram. I have established an great relationship with my doctor. We have a non-typical Dr./patient relationship. Every time I go in we joke and laugh. He asks about my family and what is going on in my life. His nurses know who I am and are always happy to see me (probably because I pay them, LOL). They all greet me by name. I am glad that I can discuss different options with my doctor and he is willing to try things I ask him about.

In order to preserve what ovary I have left, my doctor and I decided to keep me on birth control pills. I am on LoSeasonique. So I only have 1 period every 3 months. It’s really great!! It manages my pain and my hormones. And the best part is that during the time I have been on these pills, my ovary has reduced in size. I am very happy with the results of the unconventional treatment that we are trying. As long as we continue to have this type of progress, we will continue this route. Now, I only have to go a sonogram every 6 months. It was a joyous day when he told me not to come back for 6 moths. I love my doctor but, I have seen him more than any woman should have to see her gyno!!!

Going to the doctor is always an emotional experience for me. I know that another surgery is inevitable. At some point he will tell me we need to remove the current cyst or worse. I know that a hysterectomy is in my future. I hope that day does not happen for a long time. I am willing to try almost anything to keep the ovary I have left.