Slowly Breaking...

Today is the 2nd full day in paradise. Lastnight was a major struggle for her. Starting at 5:45 pm her NG Tube decided "Oh I want to bleed", so it was dripping blood for about 6 hours on and off. She kept saying that it hurt. I kept getting the nurse each time it started back up & all she said was that is it trauma in the esophagus from it being inserted. Bennetts anxiety level at this point is sky high. At 6:30 she received a visit from 3 special four-legged furry friends. It brought a smile to her face. It was all she talked about for the rest of the night. Shortly after starting to eat dinner, which is the dinner of champs (jello, broth && apple juice) she began throwing up bloody mucous. This is what they were trying to avoid. She received a dose of Zofran and it worked instantly for a short while. By now she has had enough & began pushing her nurses call button every 10-15 minutes, when poor Brittney came in she gave her the 3rd degree & for a 3 1/2 year old it was filled with anger and frustration. She told her "tell my doctor its ok I go home, i dont want anymore shots or pokes" & then she proceed to demand her to remove the IV & NG Tube. I had to chuckle a little because it is pretty sad that she has had enough to the point of telling them what is going to happen. She asked me to snuggle in bed with her, so I hopped in her bed & held her tightly, rubbing her hair & i told her that Mommy will make it all better. I soothed her until she fell asleep. She didn't sleep very well through the night. She was up several times. At about 6:50 am she hit the nurse button and so Bernie (the dense airheaded nurse) came waltzing in and said "Can I help you" Bennett replied "Im cold", Bozo asked "why?" & what came out of her mouth next shocked me. She sat up & proudly said "Because I pissed the bed, now change it". Bernie just looked at me and didn't know what to say. They disconnected the NG Tube from the bag at 7am because she had the maximum limit that was allowed for her age/weight. Lab came in and drew some blood, followed by respiratory therapy with their gear. She then went down for an xray to see what the NG Tube had done. Well the x-ray came back and there was absolute NO change whatsoever! So, we are siting here waiting to hear back from Dr. Maximack to see what he is going to decide to do. They stopped all liquids as of this am because she has a few procedures coming up at 1 oclock. One of the tests are too see how the pancreas is working and what shape it is in. Dr. Focht doesnt think he ever needed to be on the enzymes that her CF doctor put her on at 8 months old. & If that is the case then whatever damage is done to the pancreas could have been prevented. She is resting comfortably at the moment. She fell asleep about an hour ago & I am not waking her until they come to get her for the procedures. I will fill you all in again tonight. This is the complete update from lastnights blogs until now! Take Care!

What Is Cystic Fibrosis..

For the people that are not very familiar with what exactly Cystic Fibrosis is:

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

• very salty-tasting skin;
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is more than 37 years.

The Cystic Fibrosis Foundation

Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

• Learn more about Testing for Cystic Fibrosis.
• Explore all aspects of Living with CF at every stage of life.
• See what Treatments are available and what’s in development.

Day 1

Well today has been a very trying and emotional day. They put the NG Tube in around 9pm last evening and started the meds at 11pm. She slept the entire night through with the help of an anxiety medication. Dr. Maximack came in around 6am to check on her and at this point the medication didn't start to work. So, he said he wanted to up it to three ounces an hour. At around 7am is when it started to work and particles mainly liquids were being produced. So, about every 30 mins she was going to the potty. This lasted maybe 3 hrs then things stopped. She only drank a few ounces of apple juice and had a few bites of jello. She took a nap from 2pm til 5ish. The doctors arent very happy that the liquid isn't getting clear. Its more green. They do not want to give an antibiotic because it can cause the infection to get worse. They brought her dinner in and she ate all of her jello, 2 things of chicken broth & an apple juice. She started having lots of belly pains and they cannot give her anything for it at this point because of the procedures she is having tomorrow. She broke out of her room and wanted to play so they closed down the playroom for her since she isn't allowed around other children here. While she was playing her NG Tube started bleeding through her nose. It has been bleeding for 4 hrs and they are unsure why. Right now she is resting fairly comfortable with slight pains in the nose and alot of pain in the belly. I am hoping that tomorrows procedures give us positive answers. I am going to hop off of here and relax with her until she falls asleep! Please keep the thoughts and prayers coming! They mean alot! Until tomorrow....

Intestinal Blockage...

Bennett has been experiencing intestinal/bowel blockages since February 2010. Her Cystic Fibrosis doctor wanted to toy with her medications too see if that would help. He upped her Miralax from 1 1/2 packs a day to 3 packs a day and also put her on Fletcher's Castoria ( liquid laxative). It seemed to have worked for about a week or so then she started having more & more belly pains. So, I took her to Lewistown's Emergency Department on March 31, 2010. They ran multiple tests & several CATscans. They determined it was appendicitis so they transported her to the Children's hospital for surgery. When we arrived to their Emergency Department they re-read all of the tests and realized it was an intestinal blockage. They immediately admitted her. They gave her a Tween 80 Enema & once again changed her medications around & after 5 days in paradise they sent her home. Things were going along pretty well! Then out of nowhere she started having severe pains again. I called her CF doctor and he referred her to a Gastrointestinal Specialist. Dr. Focht suggested to change her diet a little. They took an x-ray & her intestine looked a mess. He called me Friday evening the 9th & had said he wanted her to do a Miralax clean out which involved drinking 119 grams of Miralax mixed in a quart of gatorade. She did that on Tuesday morning and nothing happened, so I called him back and he said to have her take 3 tablespoons of Milk of Magnesia. She took those like a champ & once again we have NOTHING! That night she was in a tubby of warm water and started throwing up. Which scared me because it was green foamy stuff. I called him Wednesday morning & he said that he couldn't see her until Tuesday of the following week to re-evaluate her. So, I reluctantly agreed and hung up the phone. Well within the hour she started to spike a fever & I immediately put her in my jeep & drove the 1 1/2 to Danville's Emergency Department. By now she hasn't eaten anything since about Sunday evening and stopped drinking Tuesday evening. We get to the ED down here. They took yet another x-ray and within the hour we had a room in paradise. They started IV fluids to get her re-hydrated and inserted an NG Tube through her nose and into her belly. That procedure was the worse thing I had ever had to struggle through. She was coughing up blood and begging me to help her because she was choking. My mom said that I lost all color in my face and I started to sweat. She had noticed I was shaking and started blacking out so I had to walk out and get fresh air. I prayed to god that I never have to go through this again or my babygirl! Well I think I have everyone up to date so I will do another blog for our 1st day in paradise with another intestinal blockage!