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!

Great Strides 2010 - Team Joyliana's Joy Seekers

Our beautiful daughter Joyliana was diagnosed with cystic fibrosis in March 2010. We love her very much and want her to not only live a long life but to have a good quality of life as well. Great Strides is one way to help make that happen.

GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. This year, I'm walking in the GREAT STRIDES walk at the Provo - Seven Peaks Resort walk on June 5, 2010. Please help me meet my fundraising goal of $50 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.

Making a donation is easy and secure! Go to: http://www.cff.org/Great_Strides/ReginaPearson then just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.

Together, we can make a difference in the lives of those with CF! Thank you for supporting Joyliana, the mission of the CF Foundation, and GREAT STRIDES!

Thanks to everyone for your support!

Joyliana's Joy

Joyliana is not being her normal colicky self. She used to cry for 9 to 12 hours a day. However, I think it's safe to say that the new normal is happy! The doctors put her on more pancreatic enzyme, upped her dosage of Prevacid, added Zantac, took me off dairy products so it doesn't get in my milk, and any formula she does get is something disgusting smelling and worse tasting called Alimentum. Alimentum doesn't have the dairy proteins that they think she's allergic to. I think with all of these together it is making a huge difference!

She is sleeping like a newborn. The Dr. told me to enjoy it. :D They think she is finally catching up on the sleep she didn't get for months and months. I feed her, change her, she plays and smiles for about 15 - 20 minutes and then sleeps until it's time to eat again. I love it!