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!
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!
