So We're In The Pokey!

For those you you who do not know Bennett is currently admitted into the Children's Hospital Of Philadelphia, since they are unsure what the cause of the fevers, cough and shortness of breathe, they have admitted her for Cystic Fibrosis Exacerabation -- which means An increase in the severity of a disease or in any of its signs or symptoms.


It all started back in January when she had the simple sinus infection symptoms of congestion, nasal drainage, fever, sinus headache and earache. So, Dr. Rubenstein (new CF Doctor) decided to put her on Bactrim for 21 days! She started the bactrim on February 1st and 15 day into it she had taken a horrible turn, her fever was really high, the congestion was worse and the breathing was just unreal. So, I had taken her to the ER -- her favorite nurse who we all love was there (Tana). They ran tests and everything came back negative (RSV, Influenza A&B), Chest x-ray was normal and her bloodwork showed elevated white count and to follow-up with her pediatrician the following day. So, that we did. When we were in his office he did an exam which he discovered she was having wheezing in her upper lobes of the lungs and crackling in the lower, more so in the right than the left. He said to continue the Bactrim and call Dr. Rubenstein. We left his office and I called her CF Clinic in Philly. He decided to put her on Cipro for 14 days and that his nurse would call me in 4-5 days too see if there was a change for the worse or better. Day number 4 on Cipro, things took a horrid turn. She had a fever (lowgrade) and she was suffered with the simple task of breathing. Carrie the CF nurse called the on-call fellow and she immediately wanted her admitted as soon as she heard the word "cough". I was instructed to take her to our "band-aid" station and have them call her so she can tell them what to do and transport her to C.H.O.P. So, around 4:30 (after stalling so the EMS crew that would be transporting her would take excellent care of her -- Thanks Adam & Justin, also Ally for giving me the advice).

After spending 4 grueling hours in our "band-aid" station and witnessing a three ring circus, they called up FAME EMS to transport her.

So, we arrive at C.H.O.P

Day 1 -- which was a hectic mess trying to take it all in here. We have learned things over the past 2 days that are upsetting. Basically, the only two doctors that have been caring properly for Bennetts case of CF are Dr. Dedeoglu & Dr. Severs (pediatricians at that) -- I give them my respect.

Things we learned on Day 1 that made my blood boil:

1 -- For the past 2 1/2 years I was being taught the improper way to give her airway clearance.

Dr. Kinsey had me only giving her the vest 10 minutes twice a day and increase as needed. In Bennetts case she needs 30 minutes 3 times a day. Well isn't that just dandy that airway clearance is the biggest thing in a CF'er. Her vest will now be given 30 minutes 3 times a day. Oi! This is alot to adjust too.

2 -- She is possibly has CFRD -- Cystic Fibrosis Related Diabetes. They are checking her sugar before each meal, 10pm and 2 am. So far they have been running on the higher side. They will be checking this for 3 days and then making a decision for treatment


3 -- She is slightly anemic. Well hello! I never knew this! Her eyelids are whiter on the inside. Her platelets have always been on the lower side on most of her bloodwork they have taken. They will be speaking to each other and seeing if she will need an iron supplement or something else to aid with this.

4 -- In her old clinic notes it states that she always had trouble gaining weight and she is a little on the slower side of gaining. Excuse me? This is news to me! They always voiced to me that she was good with her weight and they were satisfied! She does go up and down often. She has been between 40-42 for the past 6 months. I do not think that is bad. Well this is where the dietitian had gotten thrown out and told to never come back. Do NOT argue with me that I knew she was having weight gaining issues because I clearly did not know.


Day 1 overnight -- She fell asleep around 5pm & I woke her up around 7pm to eat dinner since she is unable to eat until after her Picc Line procedure. She fell back too sleep around 9pm. They wanted to do a sugar stick at 10pm & 2am. The nurse told me to refuse the 10pm stick so she could get come sleep. So, well that is what I did! Doctor was okay with that. She sleep straight thru the night until 8am! (thanks do not disturb sign).


Day 2 -- She had her nebs & vest at 8am. She is now taking the rest of her meds now. Next dose of antibiotics is 11am. She has an hour of art therapy/play scheduled today as well as an hour of music play (Mommy will need earplugs). Then sometime this afternoon she is getting her Picc.

I will update after the procedure and let you all know how she is doing/did!

It is time to go play and be a "normal" kid in the pokey! Lots of painting, coloring, movie watching!

Have a good day everyone!!