Pseudo What? Pseudomonas!

Wow!, Where to begin... First off Bennett had surgery on September 28, 2010 to have her tonsils, adnoids and tubes removed! Which is typically an easy procedure turned into a nightmare and fight for her! I feel so guilty because it was my CHOICE to have them removed or leave them be! She had been having TONS and TONS of sore throats and ear infections so I opted to have them removed! If, I knew then what I know now, I would've chosen NOT to have the surgery! TWO days after her surgery she started spiking fevers between 105 & 106 with LOTS of pain in her rib care area! I took her to her pediatrician (well it wasnt her typical pediatrician) && he said it was viral that it'll pass in a few days to keep giving her tylenol for the fever. A week had passed and the tylenol wasn't breaking the fevers, they were starting to become more and more aggressive! I ended up having to take her to the emergency room on three separate occasions for IV fluids because she was dehydrated! One ER Visit she was diagnosed with a UTI and was told to call her pediatrician the next morning! So, I did as I was told and Dr. Dedeoglu did a urinalysis, bloodwork and chest xray. Everything looked great except for an elevated white count! -- At this point it has been 2 1/2 weeks of around the clock tylenol and motrin to keep the fevers under control and the pain at a minimum. They could not culture her throat due to her having her tonsils removed and they did NOT want to disturb the stitches incase they would knock them open and the infection would spread! -- Dr. D at this point was scratching his head along with Dr. Severs! -- Dr D. contacted the oncall CF Doctor whom ordered a culture! -- Well, it took a little persuading by me to get Dr. Severs to do it since he had never done one before he did not want to cause her any harm! But, he did it and it was done correcty without any harm done to her! Well the culture was taken on Friday. October 22nd and it took SEVEN whole days for the culture to stop growing and her CF Care Coordinator called me Friday the 29th and gave me the news that I did NOT want to hear! Bennett is growing a potpourri of bacteria in her lungs! I felt my legs becoming weak and my stomach starting to turn! This is the very FIRST time in 3 1/2 years that she has ever cultured anything! I felt so helpless and it was my fault for having her tonsils and adnoids removed! At this point she has been sick with a high fever, lung pain and dehydration for FOUR weeks and we finally have an answer. She is growing several different bacteria including pseudomonas! Dr. Kinsey put her on a high dose of Bactrim two teaspoons twice a day for 20 days and TOBI (an inhaled antibiotic) two times a day for 28 days! She started TOBI on November 3rd in the evening so she took one dose Wednesday, then one Thursday morning both doses she had slight complications. Thursday evening the 4th she took her 3rd and about 30-40 minutes after finishing the dose, she became to complain of chest pain, left arm pain and she was having trouble breathing. I immediately called the ambulance and they transported her to the ER. Her heart rate kept bouncing up and down! Between 118 && 162! They gave her a treatment of atrovent and it began to relieve her chest pain! But, before the ambulance took her from our home, she threw up a huge blob of mucous! -- She was released from the ER && her CF doctor called me the next morning telling me to stop the TOBI right away! So I did! We set up a time for her to do a dose of TOBI in his office under the supervision of the respiratory therapist. We agreed for her to go into his office after her GI Procedure Monday! -- We went up to the clinic around 1pm! They monitored her why doing the treatments! During the albuterol/pulmicort treatment her heart rate stuck steady around 119 and her O2 was 99%. But, during TOBI her heart rate was around 150 && her O2 was 92%. He said that the TOBI was working the way it needed to be and she should be fine! But, he wanted us to stick close another night at The Ronald McDonald house incase she had complications. So, that is what we did! She had no complications since that night the mucous plug broke off from her lung and got lodged somewhere until she was able to bring it out! -- She has only 8 more days on the bactrim but 21 more doses of the TOBI to take! -- Please pray that she is able to finish all 21 doses without any complications! And when she gets cultured on December 23rd that ALL the bacteria and pseudomonas are GONE! -- The one she cultured is VERY resistant to ALL treatments but sometimes TOBI can get rid of it with SEVERAL treatments! It is 28 days on and 28 days off! -- I believe I have you ALL up to date and hope to write weekly! <3>