The good, the bad, and the ugly

Thought I would update...

It's been quite an interesting few weeks. Joe is applying for both math and physics teaching positions around the state of Utah, but we have our hopes set on a physics position in Park City UT. It would be out of the smog that is so bad for everybody's lungs, but especially on Joyli's. It's a beautiful city, and there might be the possibility of renting a beautiful home for a price that we afford. My mother in law, Marie knows someone who has a lot of influence in Park City. Joe met with her and she is taking Joe's resume, and letters of reference's to the principle personally. Joe was given amazing references!!

Joe is loving his calling as assistant scout master. Every week when he goes out on an activity with the scouts and young men he comes back smiling and in a really good mood. :)

Hannah is full of curiosity. And loves to show how much she loves her little sister by hugging and kissing her. However, sometimes she does it so much that she knocks Joyli over. ;) She is a very sweet girl with a very loving heart. We sure are having problems as far as potty training goes. It's so frustrating... When she was 2 she was using her potty all day long! It seems like everything changed when Joyli went in the hospital for a few weeks for a clean-out and Hannah went to daycare for a month. It's been drama most of the time since then as well. I'm wondering if it's effecting Hannah more than I realize. I've tried every bit of advice that I've received about potty training her, but nothing has worked. I've tried stickers, candy, charts, pull ups, training panties, real panties, big toilet, small toilet, potty watch, praise, applause, teaching her dolly how to potty train, peer pressure (all her friends are potty trained now!)and saying "you must be so proud of yourself, you did it!" I think when people tell me that she'll potty train when she is ready mean well and are trying to help me feel better, but I think the idea of it is total crap! She'll NEVER be ready. I recently got a book called "potty training in one day". It got rave reviews from thousands of parents. It is so hard for me to find the time to read it. (I'm also working on another book "Christlike Parenting") From what I've gathered so far, you have a big party. The author feels that some kids never "want" to use the potty. Why should they they have a bathroom wherever they go and mom and dad's extra attention when they need a diaper change. I'm really hoping that the thousands of other parents are right about this book, because it is my last hope!

Joyli somehow get's cuter every day. She's into everything! :D She toddles around everywhere. It's so cute. She has the cutest mannerisms. She stomps her little fat feet and flaps her hands and arms and squeals when she's super happy, which is often. :)

Last week her g-tube was ripped out of her stomach. That was scary... it's so weird/terrifying to see a bloody hole in your baby's stomach. I screamed for Joe and together we got the emergency button in about 3 minutes or less. We called the GI doctor on call and she said to watch out for bleeding, vomiting or fever. In the morning Joyli was vomiting. I called the surgery nurse and she told me to bring her up to Primary's. Our car was in the shop. I didn't have a car or a babysitter for Hannah. Joe's work has been really slow since it's the company's off season and they're moving to a new location. They have been asking people to voluntarily take of work for a few weeks. So Joe came home from work for this one day. By the time he called me to tell me his boss didn't mind him taking off I was at the point of panic. Joyli was not acting like she usually does. She's usually walking around, smiling, giggling in the mornings. That morning she was not smiling, listless and just laying there. Even when she's in the hospital and really sick she'll smile! So I knew something was really wrong. I used the car that Joe was using (our parents car) and started to drive Joyli up to Primary's.

On the exit to foothill blvd, I got in a car accident. There was a yield sign that I stopped at so one car could pass by, I waited to make sure nobody else was coming and then started to go. I have a feeling that the guy in front of me wasn't paying attention and that's why he didn't move when there were no cars coming, because he had plenty of time! But unfortunately, I wasn't paying attention either and tapped his bumper. I didn't see any damage to his bumper and thought that maybe he would just keep driving. But he pulled over so I did too. We both got out of our cars and I went to take a closer look at his bumper. I didn't see anything and said "do you think it's o.k.?" Then he pointed to a extremely small scratch about a centimeter long. I had to put my nose right up to it to be able to see it. The amount of damage to my parents car was a dented license plate. He said "maybe we should exchange insurances. I thought, whatever, I'll just quickly give him my insurance info and then I can Joyli to the hospital. He asked me where I was going. I told him I was taking my baby to Primary's. He said "Oh, I'm sorry."

Then next thing I know, he called the police, he called everybody. I don't get it! It wasn't like this was a new car! It was an old 1991 Honda Civic. The tiny scratch that I could hardly see could have already been there for all I know. I was taking my sick baby to the hospital, couldn't he have had a little compassion!! The policeman was very nice. When he went to look at the damage to the guys car he had to bend over and get his nose right up to it to see the scratch. I took a picture of the other car because I wanted proof that their was nothing there! As the policeman walked away and towards the police car, I swear I saw him smile and roll his eyes. I think he thought it was as ridiculous as I did.

My baby was in the back not moving except to moan and cry a little bit. It was the type of cry that she does when she doesn't have the strength to really show how horrible she's feeling. She does that type of cry every time when she comes out of surgery. I was sobbing like an idiot. I was angry at myself for making such a stupid mistake, I was angry at the stupid 30 year old guy who was making this huge fuss over a scratch that nobody could hardly see. And I was extremely worried about my daughter who was acting so sick. I've never seen her act like that before. I tried to stop crying when the cop came around to check on how far I had gotten on the paperwork. Which wasn't far since I had to call our insurance and get our policy # and all kinds of information since I had left our insurance card in our car. This cop was so nice! I explained to him that my daughter had had her g-tube ripped out the night before, was vomiting, and they wanted to see her at Primary's asap. He filled out my paperwork for me while I was on the phone with the insurance. The policeman kept apologizing that because it was an accident, by law he had to unfortunately give me a ticket. But he really seemed like he hated to do it. That made it easier.

The other guy left and I tried to start the car... the battery was dead. I lost it again, and ran back to the cop car before he left and asked him if he had any jumper cables. He said he would call someone who did. The policeman stayed there the whole time to make sure I was o.k. and then he assisted the truck that came. The car started right up and I went to Primary's. I called later and the ticket is going to cost us $120! Someone has hit our car twice and ripped off the drivers side mirror. They NEVER left a note saying "sorry I hit your car, here's my insurance." The first time it cost us $150 to fix the mirror. This time it's going to cost us almost $400!! Some idiot doesn't have the decency to be honest when they damage my car and I have to pay $550 for it. I try to be honest and pull over when I tapped this guys bumper for maybe $10 of damage (if he really wants to bother to get paint to cover up that little one centimeter scratch) and I get a $120 ticket! It's just not fair!

Any way, at Primary's the surgery nurse saw that Joyli was not doing well. She had the doctor personally escort us to the ER. We were in the ER for 9 hours (we're usually there at least 8 hours every time we go.) They did all kinds of tests, and discovered that she was severely dehydrated. When they poked her to get the IV in she didn't move, she didn't cry, she just laid there staring. She spent about 36 hours on IV fluid and then she was well enough to go home. The morning of the day she went home they needed to get some blood. 3 different people stuck her each two times and were all unsuccessful. Finally on the 7th poke they were able to get some blood. And it's never just a poke, they have to go in there with the needle and feel around for the vein with the needle. I've had that done to me enough times to know it hurts!

Joli is doing a lot better! The only thing that I'm worried about now is her cough. She started this terrible cough a little over 2 weeks ago that they were hoping to treat without antibiotics. Because when she gets done with any antibiotic she has severe diarrhea for 3 months (10 outfits a day and at least 5 baths daily). So we started hypertonic saline and more treatments. One week later her cough was horrible!! It was worse than the time she had pneumonia. So they gave in and knew that she needed antibiotics. They have definitely helped... but the cough is still there. I worry that it's going to get worse and we're going to have to try stronger antibiotics. Does that mean weeks in the hospital for a clean out? Does that mean a month of Toby (that's the $10,000 mega antibiotic) at home? That would add to the hours of treatments we already do. I don't know what I would do with Hannah if Joyli had to go in for a clean -out. The doctors have mentioned it... we'll see. The fact that her compressors never work might be contributing to her lung problems. Our 8th one just broke today!!! It completely stopped working and absolutely no steam was coming out. The respiratory therapist at Primary's said that they have gotten a lot of complaints from parents about the Pari Vios compressor. They have the parents bring in their nebulizers and they hook them up to the wall compressor at the hospital and they work fine. But when they hook it up to the Vios compressor it doesn't work. I am so frustrated. I've done everything they have suggested to fix possible reasons of why they stop working. But they're still breaking somehow. It seems like they just decide to to not put out very much air one day.

I'm sure life will be calm someday. The dear sweet retired sisters from my ward act like it's the greatest part of their week to come do Joyli's treatments. I am so grateful for them. I'm so grateful for the beyond wonderful family and friends that do SO MUCH to help us!! Our burdens are so much lighter because of you!! I'm grateful to an impossibly amazing husband! His Christlike charity never ceases to amaze me. He works hard all day then comes home, job searches, helps with the girls and does treatments so often for me!! I am especially grateful for a loving Heavenly Father. I can see His tender mercies every day, even on the especially hard days. I am very blessed.

...

Warning Blasphemy coming... "Dear God, I've decided I'm done with the depression and the cystic fibrosis, I can't handle it any more, so you can have them back now, I am just done. Thanks"

I know everyone means well, and I really appreciate the concern, but please stop asking me if I'm o.k. because I'll just say yes. And truth is, I am drowning. I get out of bed and I take care of my husband and my girls, and that's it. AND THAT'S A LOT! I make sure they are fed, I make sure they have clean clothes (even if they are wrinkled). I make sure the girls have clean diapers and get their teeth brushed. I make sure all of Joyli's nebulizers, spacers, binki's, suringes, bottles, rings, nipples, spoons, g-tube extention, and supplies are all washed and sanitized every day. I make sure she gets her Albuterol, and CPT twice a day and Pulmozyme once daily. I hook her up to a machine every night to help her get more food. I clean up the vomit that happens several times because her tummy can't handle the g-tube. I make sure that we jump every time Joyli's Dr.'s say jump and they've trained me to ask how high. I make sure the endless paperwork for insurance is kept up on because who can afford $200,000 a year? I make sure that all prescriptions never run out, because that would be very bad.

Our living space is a disaster 95% of the time. I think I'm about a few months behind on laundry. My family is living on t.v dinners and it's a good day if I actually get a shower, brush my hair and get dressed. Don't judge me. You haven't been in my shoes, you haven't had the same experiences I've had in my life. I am doing the absolute BEST that I can! The depression in so bad. This CF is such an absolute HELL!! I HATE IT!!! I hate having to beg my parents to sit with my daughter in the hospital because I just can't handle it any more. What am I going to do when she's 10? Say "Sorry kid, you have to stay here in this nightmare for a few more weeks but I'm leaving because I can't handle it?" Joyli's been in the hospital so many times I've lost track. I counted up to her 7th stay in the hospital when she was 5 months old, but she's been in there so many times since then I've just been too busy and stressed to remember to count them all.

One of my favorite books in the whole world is a childrens book someone gave us on one of Joyli's stays at Primary's. It's called: "I knew you could" by Craig Dorfman

It's of course about a train and some of my favorite words from the book are these:

"You'll go through tunnels, surrounded by dark,
And you'll wish for a light or even a spark.
You might get scared or a little bit sad,
Wondering if maybe your track has gone bad.

So here's some advice to help ease your doubt:
The track you took in must also go out.
So steady yourself and just keep on going-
Before you know it, some light will be showing.
And then you'll be out, heading to a new place.
You'll be ready for the next tunnel you face.

Sometimes you'll look up and see planes in the sky,
And you'll think to yourself, 'I wish I could fly'
The cars on the roads will seem quick and free-
you'll feel stuck on your track and think, 'I wish that was me.'

But the plane might wish he could get out of the air,
Saying 'I wish I could travel like that train down there.'
The cars will watch as you speed right along,
And they'll say to each other,
'Look how fast and how strong!'
Don't worry about not being a care or a plane,
Just enjoy the trip you'll take as a train."

It is so dark right now. I wish that light would come soon.

Daddy's gift: A Very Special Christmas

The plan was to put up Christmas decorations right after Thanksgiving... but life is complicated. A few days before Christmas I figured we wouldn't have a Christmas tree and would try to at least have a clean area for Christmas. I hired a wonderful friend for a few days to come help with Hannah, so I could focus on cleaning and errands. I only did errands and that took all my time. Part of the errands were picking up Christmas presents and delivering cookies as thank you's to the families who come every week to help me with Joyli's therapies and treatments. As I delivered the cookies I saw their beautiful Christmas tree's in their windows. A twinge of selfish sadness was there every time I saw one. There are people who didn't get to see loved ones this Christmas for various reasons and I'm whining about a dumb Christmas tree. I know, I'm selfish. When I came home Christmas eve from errands I discovered that my beyond amazing, fantastic, wonderful, husband took it upon himself to clean EVERYTHING! He made it look beautiful! Not only that but he had set up the Christmas tree!!!!!!!!!!!! I almost burst into tears! Hannah and I decorated the tree together with the lights and decorations that "pa pa" and grandma had. And daddy got to put the star on top (a star ornament that my visiting teacher happened to give me.)

To further demonstrate how special this Christmas tree was: Hannah had been asking for a pillow pet for at least 6 months. And finally on Christmas she opened up her very own bumble bee pillow pet! Finally the toy she had been asking for for over half a year! The next day at church several adults asked Hannah how her Christmas went, they asked her what presents she got. I thought she would tell them all about her pillow pet or princess table, or her new dolly. But she never said a word about any of those things to anybody. She very excitedly told every person only one thing "I have a Christmas tree in my basement!!!!!!"

We were very blessed this Christmas. The Lord has been very kind to us to bless us with such amazing, kind, charitable parents and family. Thank you to them. We wouldn't have made it without you.

I would like to thank everybody who had family serving their country and sacrificed this Christmas without those loved ones. Thank you for your sacrifice. May the Lord bless you.

G-tube

Joyli had an appointment with her tummy Dr. yesterday. He said her weight has "flat lined." He also said that if she doesn't gain enough weight in the next 3 weeks he is going to put a G-tube in. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach.

He gave her a stronger form of medication to try to get rid of the C-diff. He want's me to give her more solid food. However, the CF Dr. wants me to give her more formula and only a few teaspoons of solid food a day. She says that formula has more calories and nutrition. The tummy Dr. also wants me to give her ice cream. I thought you weren't supposed to give any baby any dairy before a year old. She's on Alimentum because any time I give her a formula that has any dairy in it she vomits for days. So giving her ice cream makes me nervous for several reasons.

The GI Dr told me that if we don't get Joyli's weight up it could have long term effects on her respiratory system. He also told me that 30 - 40% of CF patients have G-tubes. He says it doesn't greatly limit their activities and they can even go swimming and play soccer with it in. Having a tube and tiny balloon go into my baby's stomach still sounds a little scary to me. I'm going to do everything I can between now and the next 3 weeks to get her weight up.

Pancreatitis

Joe and I woke up one morning to Joyli throwing up all over her crib. I didn't think much of it until I noticed that the color was green with black specks. I've been told ever since we found out about her intestinal malrotation that bright green vomit was a situation that we needed to go to the ER for and to call the Dr. before we arrived so they could contact the ER and let them know she needed to be seen right away. So when I saw what the Dr.s described I freaked out. We called the GI Dr. and he told us that both the green vomit and the black specks were something they would send us to the ER for. Joe watched Hannah and I rushed Joyli to the ER.

They found that she didn't have a blockage in her intestines that would cause a blood clot, but that she did have Pancreatitis. The way to fix this was by not letting her eat. My poor sweet baby went without food for 2 days. After that her blood tests showed that the pancreas inflammation had gone down. They slowly added food back to her diet and on the 3rd day was able to go home.

The Dr. doesn't think she will get pancreatitis any more because 90% of her pancreas is scarred and not working. I guess you can't get pancreatitis if you don't really have a pancreas to get it with. The pancreas is supposed to produce enzymes that help digest food and thereby getting the nutrients from the food. Joyli's doesn't do this, so she takes pancreatic enzymes before every meal. We are hoping that she won't get Cystic Fibrosis Diabetes when she's older.

I need to thank my mothers. I can't believe how blessed I am!!

On the day I took Joyli to the hospital Joe came down with this horrible flu. He's still taking antibiotics and trying to get over it a whole month later. When I came home from the hospital my sharing husband gave me the flu. We laid in bed dying while healthy Hannah jumped and danced around us. My sweet amazing mother in law took care of Hannah, and brought Joe and I breakfast, lunch, and dinner in bed. All while taking care of my sister in law's children who was in the hospital having a baby! Thank you to my sweet and caring mother in law!!!

My mother offered to stay with Joyli over the weekend. This was a blessing for several reasons. #1. I had Joe's flu and could hardly move anywhere, let alone take care of a baby. Reason #2. Being in the hospital with my daughter is one of the most horrible things that is on the top of my list of things I hate the most. The first week she was in the hospital for her surgery was a living Hell!! When she's there I feel overwhelmed at how many Dr.'s see her for all of the multiple problems that she has and that they seemingly most of the time don't talk to each other. So every Dr. wants something different and my daughter is left suffering while they hum and haw over what she really needs. It's so FRUSTRATING! And when I say "enough!" they all look at me like I'm the crazy, psychotic mother that expects too much. I can't stand to be there in the hospital while the Dr.s play Guinea-pig with my daughter, but I can't stand to be away and trust that everything will be o.k. either. I do however trust my mother to stay with Joyli, because she is a caring grandmother who loves her granddaughter and because she's an RN who's not afraid to speak up and say "excuse me, I think you might be doing that wrong". I know this is selfish, but I wasn't ready to be back in the hospital with my daughter and those Dr.'s that I know really are trying to help. I'm so grateful for my mother who spent so much time with Joyli her 2nd time in the hospital and again her 3rd time in the hospital. Even after a day the hospital walls seem to close in on you and Joyli's crying and the Dr.'s not doing anything about it gets unbearable to take. For my mom to do it for so many days makes her a hero.

Several people helped me so much during Joyli's 2nd hospital stay when she was there for weeks. My sweet step-mother also stayed with Joyli for several days and a wonderful stranger (I hadn't met her yet) from our new ward stayed with Joyli for a few hours while I was in the temple as my grandparents were sealed together. I was able to do that work for my grandmother. What an honor and blessing! And how amazingly blessed I am to have so many Christ-like people in my life, bending over backwards and turning their lives upside down to help my family and I. I don't know how I'll ever repay everyone or even begin making this up to my Heavenly Father and Savior. But, I'll always look for ways to try.

Joyliana's surgery

Joyli had been projectile vomiting for over a month. I knew something was wrong and insisted she see a stomach Dr. The nurse at the CF clinic thought I was crazy and set me up with Dr. Pohl (a gastroenterologist) that is also at PCMC. He thought she might have Pyloric Stenosis which I thought would be horrible because it would require surgery. They did two x-rays with barrium and an ultrasound. They finally concluded she didn't have Pyloric Stenosis. I was overjoyed! They did find out during this time that Joyli is allergic to dairy. Once I got off dairy (so she didn't get it through the breast milk) and once she got on Alimentum the vomiting almost stopped.

I happened to mention that vomiting was still a problem to Dr. Pohl at Joyli's next appointment and he ordered yet another x-ray. I rolled my eyes but took her to get the x-ray any way. They looked closer and discovered something even worse than Pyloric Stenosis, they found that she had intestinal malrotation. It meant that her intestines were going the wrong direction and needed to be fixed before a blood clot happened. We also found out a few days later that Joyli had pseudomonas and would need a "clean out". Pseudomonas is a bacteria that is found in soil, water and other areas that contain moisture. It sticks and grows in the lungs of a CF person, and over time scars the lungs. Pseudomonas isn't harmful to healthy people, but effects people with CF because of the thick mucus in their lungs. A clean out consists of 4 Albuterol treatments, 4 CPT (Chest percussion treatments), 1 Pulmozyme treatment, several Tobi antibiotic treatments throughout the day and night. I included a video that demonstrates the administering of Pulmozyme and CPT's.

My sweet RN mother threatened the surgeon and told him she wouldn't allow any residents to operate on Joyli. ;) She's worked in the OR before and has some horror stories involving residents. The surgeon was very experienced and said the surgery was "text book". Joyli recovered remarkably quickly. The nurses at PCMC are incredible! I didn't have one that I didn't like. I did however, have a problem with two of the doctors there. It's a long story that I won't get into, but after a week of my baby suffering, and a week of trying to communicate effectively with the Dr.'s and them telling me different stories, I said "enough" and called that "help" number that gives the parents a Parent advocate. What an amazing blessing that number and service is!! Everything changed for the better after a meeting with the surgeons, CF Dr.'s, CMU Dr.'s, and the Parent advocate. Everyone finally got their stories straight about what Joyli needed and what would make her feel better.

After 15 days she was released and by the end of her hospital stay she was my sweet, happy baby again! I'm so grateful that they were able to do the surgery and the clean out together and she only had to spend 15 days in the hospital instead of 30. We've learned that being in the hospital is very hard no matter how great the hospital, Dr's and nurses are. Thank you to so many family, friends, and ward members who made this experience bearable!! We are so amazingly blessed and love and appreciate you so much!

Joe's surgery

Joe was told his hand was in a "stage 4" and if it got to a stage 5 that he would lose the use of his hand. The only way to prevent it from going to a "stage 5" was to have surgery done. Thankfully after a almost a year the insurance finally approved the surgery and Joe had his wrist/arm surgery done July 12, 2010.

The surgery went well, and Joe and I both felt like he had a very competent doctor. Joe unfortunately had a bad reaction to the anesthesia. He threw up for 3 days and couldn't keep anything down, not even small sips of water. I walked into the bedroom on the 3rd day post surgery to give him is pain medication and found a terrifying sight! My sweet husband was black in the face and his lips and no color at all. I honestly thought for half a second that he was dead. It even took me a long time and a lot of yelling to try to wake him. I had called the Dr. that morning and had picked up the nausea medication, so I gave Joe the first dose of that along with the pain medication. I told him that if he threw up one more ounce I was dragging him to the ER! But the nausea medication did it's job and Joe finally was able to keep at least liquid down. My poor honey! :(

The last physical therapy appointment he went to showed that he has improved a lot! Originally the Dr. told him he wasn't supposed to lift more than a glass, but the last therapy appointment they told him he was clear to lift up to 8 lbs with his hand. He's still has pain, but it gets better every day, we feel very blessed!