What Are YOU Afraid Of?

"What are you afraid of?" were the first words out of Dr. Rubensteins mouth when he walked into the exam room during Bennetts clinic appointment on June 14, 2011. I just stared at him with a blank look on my face because that question totally caught me off guard. He then said "Seriously, put it all out there What are you afraid of Emily?" Instantly I began to cry (I am a VERY soft person now that I am a parent of a child with special needs, I am not longer that tough girl that I once was in high school and up until the birth of Bennett, My fellow high school classmates can verify that statement) & I start to name the things that I am afraid of:

* I am afraid that I will NEVER get too see my daughter graduate highschool

* I am afraid that I will NEVER get too see my daughter go on her first date ( at age 40 ;0)

* I am afraid that I will NEVER get to see my daughter go off to college

* I am afraid that I will NEVER get too see my daughter graduate college

* I am afraid that I will NEVER get too see her walk down the aisle on her wedding day

* I am afraid that I will NEVER become a grandmother

* I am afraid of so many more things

Dr. Rubenstein interrupted me and said "Cystic Fibrosis will be the cause of your daughter's death. I cannot tell you when she will die, but I can tell you that it isn't any time soon. I am a scientist that researches 4 days a week and sees patients 1 day a week. I know you lost trust in all medical staff because of Bennetts last clinic. I am not asking you to trust me. I will earn your trust in the months to come, but I am asking you to allow me to take care of your daughter to the best of my ability. The things that you said you are afraid of may come true. Cystic Fibrosis has a mind of its own." It is a brutal disease that is causing your daughter to suffer and eventually die.


Then he proceeds to tell me that he is worried about Me, yes ME. He isn't not worried about Bennett, it is ME that he is worried about. I asked him why with yet another blank, puzzled look. He told me that my anxiety level over worrying about Bennett dying is the highest he has ever seen in any of his patients parents. He said that I am ONE of the only parents that is on top of her health, medications, therapies and appointments, that goes above and beyond to make sure she is healthy as she can be. He told me that I am dedicated to taking care of her medical needs. He said that it is outstanding how much time I dedicate DAILY to taking care of her and he wishes more of his parents would do it. At this point, I am sobbing because this talk is causing the reality of Cystic Fibrosis become more apparent. I never really talked about my fears before until today. It made things more surreal. I am still in denial a little bit but not as much as before. It breaks my heart everyday that she suffers because there isn't anything that I can do besides give her the best life I possibly can. I am trying to do the best I can. It is hard. It is very hard. I would never wish this disease on my own worse enemy. My babygirl does not deserve this disease. What did she do to deserve it? She is just an innocent 4 year old little girl thriving to be a normal child!



Yes, I am proud of how much time I spend daily focusing on her needs! I truly do not mind sitting on the sofa with her 3 times a day for 30 minutes at a time while she does her vest, standing in the kitchen 15 minutes 3 times a day while she takes her meds/sprays, spending 1 hour 2 times a day doing physical therapy with her such as relay races, doing exercises on the yoga ball strengthening her tummy muscles, etc. Our entire day isn't consumed with CF related things eventhough 75% of our day is. We go to the park, swimming, playdates with friends, the library and movies.


What Mommy wouldn't have anxiety over their child passing away? I watch her struggle on a daily basis to do the simple things that alot of us take for granted such as smokers. I cannot tolerate smokers anymore because they are taking their perfectly healthy lungs and turning them into junk when they could be used for a CF patient that cannot control their lungs being a piece of shit! The next time you light cigarette think of a 4 year old little girl who would give the world just to be able to breathe like we can. IS that cigarette as refreshing now?

Oh how about you drug addicted screwballs that enjoy being on your suboxen that the GOVERNMENT PAYS 100% for while a 4 year old little girl gets denied by her insurance on a daily basis for medications that she NEEDS to live, she didn't chose to have Cystic Fibrosis like you CHOSE TO STICK A NEEDLE IN YOUR ARM for what? An hour of drooling on yourself, doozing off and not remembering a damn thing while you were higher than a kite on an illegal drug? How does it feel knowing that one of the medications she takes on a daily basis to help her breathe better is given to you worthless fucks when you overdose to bring you back to life? Think about that the next time you want to stick the syringe in your arm!

Again you drug addicted scums get to enjoy your FREE money from the social security administration. It must be nice to be handed a check every month for being a waste of air! I had to fight for 3 1/2 years for my chronically ill daughter to receive what she deserves. While you spend your $700 a month on drugs, think of this same 4 year old little girl who has a lung disease because she only receives $44 a month and that is the costs of ONE dose of ONE of TWENTY TWO medications she is on!

No I am currently NOT working, I WAS working! I worked for 2 1/2 years of Bennetts life until she became too ill and I had NO OTHER choice but to walk away from a job that I loved doing. While I was at work it was the only time I did not have to think of CF, She was in good hands with my Mother. NO I do NOT receive ANY help from ANYONE. I am doing this on my own. And it is NOT easy at all but we manage. I have very few good friends and MANY MANY MANY friends that I have never met that are here for me more than the friends I have here at home!

I must stop this rant NOT because all it is doing is upsetting me even more! I will write the rest tomorrow!!

May 24, 2011 -- GI Appointment

This is the appointment that I figured would go well but unfortunately I was wrong. We met with her new GI Doctor, Dr. Masacarehnas. She is very thorough but was full of heartbreaking news! She told us that Bennetts old GI Doctor possibly misread her Pancreatic Stimulation Test. July 2010 Bennett had a Pancreatic Stimulation Test done too see if she was Sufficient or Insufficient. She was taking Creon 12000 since birth and when her CF doctor referred us to her old GI doctor he was astounded by the amount of Creon she was taking for being only 4 years old so he suggested we do this test. Well the results he told us were that she was Pancreatic SUFFICIENT and no longer needed to take the enzymes to stop them immediately. He followed her care for almost a year. From April 2010 to April 2011 she needed to have FOUR NG Tube Cleanouts for bowel/intestinal blockages. Her new doctor Dr. M diagnosed her with DIOS (distal intestinal obstruction syndrome). Yes, we have yet another "disease" under out belts. Lovely huh? Dr. M is having me do a daily diet log & wants a stool sample to run tests on her. Once these stool test results are back we will move onto the next phase of testing. Dr. M believes that Bennett infact isn't Pancreatic Sufficient. She told us by reading her old records from Geisinger that she is Pancreatic Insufficient and perhaps needs to be put back on the enzymes. At this point in the appointment I am in tears because my babygirl has yet another new diagnosis. It is killing me inside. My baby does NOT deserve this.

Unfortunately, I have NOT been able to do the daily diet log because Bennetts appetite has diminished. She hasn't been eating enough to keep a bird alive and her belly is very swollen and hard. Which indicates she is obstructed again. Her last good bowel movement was now 5 days ago. She has taken TWO Miralax cleanouts of 255 grams of Miralax mixed in 64 ounces of juice and has one passed liquid. The liquid is stretching out around the hard blockage. It has been 6 weeks to the day since our last NG admission. This is truly unfair. She takes Miralax 6 times a day, Benefiber 3.5 grams 3 times a day, 2 tablespoons of Milk Of Magnesia, and 2 tablespoons of Fletchers Castoria a day and still has problems. We have tried to change her diet, given stool softeners and everything but with her having DIOS, there isn't much we can do besides surgery and NG cleanouts every 6 weeks for the rest of her life!


Below is a link that has a better explanation of what DIOS (Distal Intestinal Obstruction Syndrome) is:

Distal intestinal obstruction syndrome (DIOS) involves blockage of the intestines by thickened stool and occurs in individuals with cystic fibrosis. DIOS was previously known as meconium ileus equivalent, a name which highlights its similarity to the intestinal obstruction seen in newborn infants with cystic fibrosis. DIOS tends to occur in older individuals with pancreatic insufficiency. Individuals with DIOS may be predisposed to constipation.

Symptoms of DIOS include crampy abdominal pain, vomiting, and a palpable mass in the abdomen. X-rays of the abdomen may reveal stool in the colon and air-fluid levels in the small bowel. Surgery is often required to relieve the obstruction. However, if there is no sign of bowel rupture, a more conservative approach may be attempted. Restricting oral intake, placement of a nasogastric tube for decompression of the stomach and proximal intestines, and administration of laxatives and enemas may resolve the obstruction without the need for surgery. Individuals prone to DIOS tend to be at risk for repeated episodes and often require maintenance therapy with pancreatic enzyme replacement and stool softeners.

http://www.cfeducation.ca/pdf/DIOS_Children.pdf

May 24, 2011 -- Allergy Appointment

Bennett was still suffering from her severe allergies despite being on Singulair, Claritin, Flonase & Zyrtec. She was put on those excluding the Singulair April 5th. She was/is still experiencing really bad congestion in her sinuses and chest, her ears, nose and throat are really inflammed and her eyes are puffy & red. I made an appointment for her on May 24, 2011 & we discussed what our next step would be. Dr. Rosemary added Allegra and two eyedrops to her Allergy Med list too see if she could get at least some sort of relief. And the next step is injections. They would like to be able to do skin testing on her because it is more accurate than the blood tests that she has had. But, they cannot do the skin testing because she cannot be off of her Allergy medications the required 5 days in order to get a good reading. :0( We are hoping that we can get them under control and she is able to have the testing done in August. The problem with the injections is that they do not do them on patients under 5 years of age. We agreed to start her on them in September 2011. She will receive injections, one per hours from Noon-5pm, 5 days a week for 6 months! She is only allowed outdoors for a maximum of ONE hour per day unless she is having a "good" day! I have been having my hands full trying to keep her occupied and not asking to go outdoors to play and swim with her friends! I am starting to run out of ideas! If anyone has an cool craft ideas please forward them onto to me!

For the past two days she has had a slight fever, runny nose, and her eyes are starting to get dark circles around them. Major indications that she is becoming sick. Her allergies play a huge role in her CF flaring up, the sinus drainage is draining into her lungs and causing it to be harder to breathe for her. She just had a tune-up from February 21, 2011 to March 7, 2011 & her CF Doctor & I have been emailing back & forth about admitting her on June 14th straight from her clinic appointment for a 21 day stay! :0(