0800 Roanan ate 2 ounces-without Creon
0900 Firefighters came and visited. They also gave away mini fire dogs!
1000 Vest 14 minutes at 12 frequency
1005 Steroid via broviac
1010 Nebulizer treatments
1030 Ranitidine & Azithromycin
1100 Oatmeal+prunes+applesauce+sugar+butter+1 ounce fortified breast milk+12,000 Creon
1115 2 ounces breast milk
1125 The mob came in and said everything looks great! All the interns and students felt Roanans broviac and the tubing running up his groin
1200 1 ounce breast milk, no Creon
1240 3 ounces breast milk, 12,000 Creon
1305 Vest 13 minutes, 12 frequency
1415 98.4 temp, 100 oxygen saturation
1430 Lily the Doberman came to visit. Roanan was so in love! She was so kind and didn't mind Roanan pulling on her hair. Pet therapy is amazing.
1600 Vest 10 minutes, 13 frequency
1610 Started antibiotics via broviac
1700 Oatmeal+applesauce+butter+sugar+1 ounce fortified breast milk + 12,000 Creon
1710 Antibiotics done
1900 Oatmeal+applesauce+butter+sugar+6,000 Creon+.5 ounce fortified breast milk
2000 99 oxygen saturation, 112/60 BP, 16.71lbs
2012 R asleep
2030 they brought R's vitamins and Ranitidine, he was asleep and therefore missed them. (I was not waking him up for that.)
*At some point they hung a new bag of fluids and gave him another steroid during the night.
We are still waiting on biopsy results from the bronchoscopies. We were unable to add the probiotics since they were unlocatable. We will try to find them tomorrow and get them added to the oatmeal mixture. R is finally getting used to the steroids and is calming down a little. He is gaining weight like a champ and everyone is impressed. The nurses say that he is their favorite. Sometimes they come see him just to catch his smile. We are still waiting for his vest to come in, but they did find a smaller one here that works much better. He is the perfect tiny human to spend a 1 on 1 vacation with.
While we are up here we get to share our cf story with so many people. By doing so, we are sharing Gods love as well. Roanan, Seth, and I are trying to educate as many people as we can about CF so better care will be provided to families in the future going through long hospital stays. We try to explain the role of enzymes and the reason why they are taken and how. CF is alot of information and surprises. The more educated a person is the more successful they will be.
We pray that our story will lead someone to Christ.