HIPAA, HIPAA, HIPAA!!

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HIPAA What Does it All Mean??

I just received another conference notice.  This time, it’s about HIPAA, it will be held in Washington DC for the small registration fee of $1,195.00. But, if you are late paying, the cost goes up to a measly $1,795.00.   This 3-day conference will cover breakouts, keynote speakers and probably everything and even more than you ever wanted to know about patient privacy. Do I sound sarcastic?  Maybe just a bit?  What about us patients who walk into a doctor’s office or a hospital setting and sign that we received the HIPAA policy (and have no clue what it says).  Or, we are told “no” for any number of things like we want to find out about a patient, want to accompany a patient to a doctor’s office or are trying to help a patient / friend get information.  We get “HIPAA, HIPAA, HIPAA” (said in the whiny Jan Brady voice).I wouldn’t pay $1,000.00 to go to Washington to learn about HIPAA nor would I pay $100.00 and now YOU don’t have to either!

Greg Radinsky, vice president and chief corporate compliance officer North Shore-LIJ Health System,

On February 1, 2011 NorthShore LIJ Health System is lending out their Vice President and Chief Compliance Officer Greg Radinsky to help us, the general public understand “HIPAA Everything You Want to Know About Patient Privacy but Are Afraid to Ask"  and it will be FREE to all who want to attend.  We just ask that you bring your business cards and take notes.  You may never get another chance like this again!
When:  February 1, 2012Time: 1:00 – 3;00 PMWhere: South Nassau Unitarian Universalist Congregation, 228 South Ocean Ave. Freeport NY
Who should attend:  Anyone who advocates for patient’s, is a patient or may be a patient and wants to learn about HIPAA in terms you can understand.
RSVP to PULSE (516) 579-4711 or icorina@pulseofny.org

See a list of upcoming free educational programs here. http://www.pulseofny.org/series.html

This program is sponsored by the PULSE of NY Patient Safety Advisory Council

About PULSE:

PULSE is dedicated to raising awareness about patient safety and reducing medical errors through advocacy, education, and support. We work to empower the public to make informed decisions, increase effective communication and respect between healthcare providers and the public, and create community partnerships that will foster and ultimately lead to safer healthcare environments.

Bedside Manner(s)

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Snotty Nurse

We named her “Snotty Nurse”.  Not a very nice thing to call someone who works with critical care patients and sees what is probably the worst of the worst in the hospital.  But, her bedside manner just wasn’t there.  When the nurses change shifts or doctors did rounds she would say to anyone there quietly sitting at the patient’s bedside, “You have to leave” in a tone that was anything but pleasant.  No explanation.  When the patient, a 20 year old boy just opened his eyes and recognized me for the first time in over 24 hours and he squeezed my hand while scared from the ventilator breathing for him, I begged her to let me stay 2 more minutes.  “He just opened his eyes and is holding my hand tight” I told her.  “No, you have to leave” she said abruptly.  Reluctantly I gathered my things and left so the doctors could talk about him without any input from the people who know him best.She doesn’t say hello as all the other nurses do.  There is no greeting or acknowledgement, but  she will grunt something if someone is in her way or if we greet her with a “good morning”.  She won’t explain things to the patient’s mother unless asked and when one guest tried to relay information, she gave a sarcastic reply.I began to realize that this nurse can actually become a liability to a hospital.  Were something to go wrong, the family may feel she didn’t listen and want to hold her, as a representative to the hospital, accountable.  There was a time that the patient’s family didn’t want to “bother” her with information, that was important about the patient’s look which turned out to be relevant to this patient’s outcome.  Some people feel that bedside manner is irrelevant but the fact is bedside manner is an important piece of communication which can help predict an outcome.  Most probably, the care will be fine and the outcome will be good.  But, if not, I for one will wonder about this nurses patient care.

Don't Second Guess Yourself

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A Mother's Love

I have been a patient advocate for over 18 years.  Starting when my son died 20 years ago but then I had another child 19 years ago and another very premature son 18 years ago.  I became Matt’s advocate even before he was born when doctors told me I miscarried, I demanded a sonogram to show he was fine inside of me, and my skills strengthened when I gave birth to matt 4 months early.  I spent almost 5 months in neonatal ICU and learned, from the caring nurses, what questions I should ask and how to be heard.  In 2005 a group of people led by PULSE of NY started gathering to develop information we called Family Centered Patient Advocacy and we wrote a book on how family members can become patient safety advocates.  Since then another group of doctors a pharmacist, social worker and lay people developed a curriculum to follow the book.  To date we have trained about 250 people mostly small groups on and near Long Island to partner with the medical team for the best possible outcome in their medical treatment.  I have put in over 600 bedside advocate hours in the last few years and continue learning from people I am supposed to be teaching.  It is a never ending “learn fest” when it comes to what can happen, or go wrong in a hospital. 
70% of bad outcomes come from poor communication.  It’s crucial for patients and their loved ones who care for them to understand the care plan, treatment and medical condition that is being diagnosed or treated.   
When my dear friend called to tell me something was wrong with her son, his nails were blue and he was slumped over, she said, it was my first reaction to say “If you think something is wrong, than it is”.  She was right.  As he lay in the emergency room late that night, long after I left, she asked someone to take his temperature.  The nurse could not awaken him.  Two more times he could not be awoken and finally the next morning he was intubated and there he stays, days later, in ICU with his mom lovingly watching over him struggling with staff to get answers.
There is no question, if she did not get him to the hospital that night, he would not be here today.  They would have all gone to sleep and there would have been no one to try to awaken him. Yes, it was a mothers actions that saved her child.

Family Centered Patient Advocacy

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Family Centered Patient Advocacy

“I have no idea who is in charge of my husband’s care.  One doctor says one thing and another doctor says another.” The emotional voice of an elderly woman, obviously scared for her husband’s well being, was on the phone early one morning.  She explained that her husband was hospitalized for a stroke, and she had questions that weren’t being answered.  She spoke to the patient representative at the hospital but still was confused about his diagnosis and the plan for his care.

The PULSE Care Coordinator (CC) didn’t need the details of his health; she only needed to know his name, the hospital and room number.  Following the normal routine of phone calls, first to the patient representative and then to the manager of the patient representative’s office, the CC  explained that there is a patient’s family in need of extra attention.  By the time the CC called the patient’s wife back, the Patient Representative from the hospital was walking into the patient’s room.

Calls like these are common at the small office of PULSE of NY a community-based patient safety organization. It often helps when an independent person or Care Coordinator, helps the family navigate the health system, knows who to call and helps the family with understanding their rights.

When visiting a family who had a very sick new mother in the hospital for a week, the CC learned that the family didn’t understand the care plan.  The CC organized a meeting with the doctor’s in charge, the nurse manager and the family and was able to sit with the family in the meeting and assign a family member to take notes. 

The Family Centered Patient Advocacy Program has been developed to train and support, as a patient’s advocate, the family member or friend of a patient scheduled for surgery, diagnosed with a life changing condition, elderly, suddenly injured or scheduled for an invasive procedure.  This program has been developed to empower the community or family member(s) to understand their role as an advocate and partner to help ensure the best possible outcome in the patient’s care. Family Centered Patient Advocacy assists the patient’s family in navigating the health system to help ensure safe, quality healthcare services.  While the family of the patient may be too emotionally involved to help make decisions, understand instructions or ask appropriate questions, Care Coordinators from PULSE of NY are trained to help the patient, and their family in person or by phone to make the best decisions.

A trained Family Centered Patient Advocate, with the help and training Care Coordinator will be able to help:

·         A patient speak-up for their needs and understand their rights while hospitalized,

·         Reduce the chance of patient hospital readmission,

·         Assist the patient in understanding the diagnosis, care plan and discharge instructions,

·         Assist in reducing medical errors with training in policy and patient safety standards,

·         Speed the recovery of a patient who has assistance from professional help at home, trained community members, family and friends.

Care Coordinators can be on call to help the Family Advocates over the phone or in person if there is a breakdown in communication, stressful decisions to be made, or the patient needs help in preparing for the doctor’s visit or a hospital stay.

PULSE of NY is looking for independent Care Coordinators who will help the family and friends of the patient understand the healthcare system and what they can be doing to help oversee a patient’s care.

PULSE of NY is seeking volunteers to be trained as independent Care Coordinators who help family and friends of a patient understand the healthcare system and who assist in overseeing a patient’s care.

In many cases, the coordination can be over the phone.  When there are hospital visits, it is often to listen to the patient and family about concerns which are usually about communication.  Explaining treatment or diagnosis must be left to the healthcare providers, but a Care Coordinator can facilitate the patient-provider conversation either in person or over the phone.

Today, more and more family members are expected to be at the bedside of the patient, but they are not taught what they should be doing there. Care Coordinators help the patient’s family and friends understand the importance of hand hygiene to avoid infections, checking medications to prevent medication errors, preventing falls, preparing for the doctor’s visit with lists of questions and concerns, advanced directives, record keeping, and surgery safety protocol, while helping with health literacy and communication breakdown within the hospital and or medical facility.  The Care Coordinator may have little contact or communication with the patient; instead, their contact is with the family, training them to be the patient’s advocate.

If you are interested in being trained as a Care Coordinator to help the family and friends of the patient as a patient’s advocate please call PULSE of NY at 516-579-4711 or e-mail icorina@pulseofny.org

Being Alone With a Healthcare Provider

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Alone with the Doctor
I got a text message from my teenage son who is away at college and he tells me he is at the nurse with his female friend and the nurse told him to leave the room. Yes, the same son who asked a doctor to wash her hands and got an “annoyed attitude”.  As her advocate he expected to stay with her.I reminded him that the nurse may have wanted to ask her about her sex life, drug use or sexually transmitted disease and was not going to ask, or expect an honest answer, in front of him.  “She fell and hit her head, it has nothing to do with sexually transmitted diseases” he told me.  But, I explained to him, being pregnant might make a girl become dizzy or, was she actually being beaten or abused?It was a good reminder that patients need time alone with their healthcare provider.  As advocates, we tend to want to be with the patient – always – but it doesn’t always make sense.A few years ago I was at the bedside of a patient following her surgery when the nurse was asking standard questions; do you smoke, snore, are you safe at home………?I later pulled the nurse aside and suggested that a question about a patient’s safety be asked privately.  “What if I were the one abusing her?” I asked the nurse.Although we want to be with our loved one, it makes sense to leave a husband, wife, friend or other family member alone at some point to have these private discussions with their healthcare provider if they want.  One way to do this is to say ahead of time to the patient, “I don’t mind leaving you alone to talk privately with your doctor”.  If warned in advance, it can be done at any time during a visit.  A patient can always say “no, stay with me” but it gives them an opportunity to be alone and not offend you.

Accredited and Complaints

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Accredited Facilities

I was always pretty confident that I would recommend a Joint Commission accredited facility instead of one that is only inspected by the state.  Joint Commission standards are higher than the state and the state can easily say they are overworked and don’t have the budget to hire more people to check on problems.

As I visited a local healthcare organization recently which was not accredited by The Joint Commission, the differences started to unfold in front of me.  Although I am far from being an expert, the whole feel of cleanliness and care was very different than any place I ever visited.Besides the fact that almost none of the staff say hello, greet the patient or visitors with anything but a “did you call?” or even smile when I smile at them, they seem unhappy having a job and particularly working in this facility. I went to the nurse’s station and asked a woman if she had an antibacterial wipe that I can use to wash a television remote that fell on the floor.  She handed me a container that was empty.  I showed her it was empty and asked if she had antibacterial wipes.  These, I explained do not say they kill germs and are for hands, not objects.  She stared at me for a moment and handed me another container of the same product.I can’t be sure that if this facility was accredited by the Joint Commission it would be any different, but when I started to see areas of concern, I thought about who the patient or their family would complain to.  The state has reported being low on funds.  What if they never got to my complaint?  Who would I complain to then?  The Department of Health is not going to go out of business, even if they are backed up for years.  Organizations like The Joint Commission are independent and would have to hire more people if the problem got out of hand. I wouldn’t say that a facility not accredited by the Joint Commission is a better choice or not.  What I am concerned about is what if things aren’t going smoothly.  Who would you want on your side

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What's in a Word?

A 17 year old who is living with me was desperately in need of a tonsillectomy. I made the choice to go through it with him even though my child bled to death, for 8 days following his tonsillectomy a number of years ago. Repeated trips to the emergency rooms were halted with the doctors saying "don't worry". Years later, I realized it is my job, as a parent, to worry and those words, used by a healthcare professional are worse than fingernails on a chalk board............... now what?

The surgeon answered all of our very suspicious questions about his history of tonsillectomies very eloquently until I asked the young man to leave the room and shared my own personal experience with the doctor. He looked me in the eye and said "I understand your concern".
Imagine my shock when the child I am caring for, on day five, began spitting up dark red blood. When I reached the surgeon by phone, he again said "I understand your concern" and again said it after he treated him at the hospital. Not until about 2 days later did I realize this physician has never used the term "don't worry".
I thought it important to share this and let people know how important words can be when there is an emotionally charged situation. 
The words "don't worry" can be seen as an order - or being told what to do (or not do). They leave no room for dialogue unless someone who is scared wants to put up a fight. Rarely will someone stop worrying because someone tells them to. They will, instead hold back their true feelings and concerns, maybe pleasing the medical professional who doesn't want to explain any more??
This surgeon was justifying my feelings. By recognizing he understood, I had no reason to pursue my concerns because he heard me.
I hope people in the medical field will throw out the words "don't worry" and try using, instead, "I understand your concern".

C. diff

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Washing Hands Can Make a Difference

Wash your hands before eating takes a whole new turn afterreading this article in LI Newsday.A recent article in Long Island’s Newsday by Delthia Ricksexplains in detail the problems with the bacterial infection Clostridiumdifficile, also known as C. diff.  Thisbacterial infection, known to cause severe pain, diarrhea and high fever is aserious problem in hospitals throughout the country.   In 2009 there were 337,000 cases Ricksreports in the article, more than doubling the number from the less than tenyears earlier. The spores can live for months and can be spread if notkilled with bleach in a room where the spores might be living in a patient’sroom.  To clean hands from the sporessoap and water must be used.  The handsanitizers won’t do it.So how does this change what we already know?  As a patient safety educator I will letpeople know that soap and water must be used when someone enters the room totreat a patient.   If you feeluncomfortable asking someone to wash their hands, carry this article with youand tape it to the patient’s wall.  When a family memberor friend visit – leave the flowers home and bring a container of Cloroxwipes.  Grab some gloves and wipe downthe room.  The tray table, bed rails,door and door knob, TV remote, call bell and sink.

Wash your own hands repeatedly with soap and water and ifyou touch anything wash again.  Yourhands may be clean when you come in but anything you touch can be contaminatedwhich will start the process of contamination over again.A recent discussion at a group training caused an outburstby a woman when I suggested that unless hands are noticeably soiled,antibacterial lotion can be used.  Shewas upset by this comment because her mother suffered from C. diff.  Her knowledge on the subject made me and mycolleague Jeff, who has been offering these programs with me, to rethink how wediscuss infection prevention.  If C. diffis as big a problem as it is said to be then we have a right to insist on soapand water.

NY State information on C.diff http://www.health.ny.gov/publications/1495/
Pamphlet on C.Diff http://www.health.ny.gov/publications/signature/1495.pdf

Health Literacy at it's Worst!

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The High Cost of Health Literacy

I have been following the story of John Gonzalez, a 70year old man from Long Island who spent six months in jail after killing hiselderly mother.  He was let out with timeserved and will have five years probation. The reason he was let go is because the judge and everyone on the casefelt bad for him because he was diagnosed with cancer and thought he would soondie.  He was the only person who couldcare for his mother and out of desperation, took her life and tried to take hisown.  The Newsday article by Andrew Smithreads in part; He suffered from diabetes, joint pain and other maladies. Then, when he got aletter from his doctor informing him that a spot on his hand was skin cancer, his poorEnglish led him to believe he was going to die soonand no one would care for his mother, Brown said.I can only imagine how many other times Mr.Gonzalez has used the healthcare system and didn’t understand the diagnosis andtreatment.  The article also reads:  Aftershe died, he tried to kill himself by taking all the insulin he had andslashing his wrists. He was unconscious for four days and, as a result of theinsulin overdose, he wrecked his kidneys and now needs dialysis at least threetimes a week.So now, not only is a woman dead, but Mr.Gonzalez will be getting medical treatments that will cost the economy plenty – just becausehe didn’t know where to go for proper information or an interpreter who couldhelp him understand.More to come – You can count on it!

Rapid Response Teams

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The Rapid Response Team

While sitting in the waiting room at a hospital waiting forthe patient to come out of surgery, I heard over the loud speaker, “RapidResponse Team to 2 west, Rapid Response Team to 2 west, Rapid Response Team to2 west”.  The words broke the otherwise silenceof family waiting patiently reading or texting.They were unaware of the importance of the words they justheard.  The excitement ran through mybody because in the middle of a sunny afternoon, hospital staff were acting ona fairly recent system to save patients who might otherwise die.The Rapid Response Team, also known as the Medical EmergencyTeam is in place at many hospitals to be called by patient, family or staffwhen a patient is in need of fast intervention. Unexpected cardiac arrests in hospitals are usually preceded by signs ofinstability (1) and these patients are often cared for by junior staff. (2) Following the Australian model the Rapid Response Team orRRT brings ICU level care to the patient’s bedside using interdisciplinaryteams.(3)Although there is still some controversy such as would thismethod be abused or are highly trained physicians being taken away from onepatient to care for another(3), those of us know the importance of the RRT alsoknow that we would rather be in a hospital that uses them, than not.Look for the signs on the wall of your hospital and see ifthere is a RRT in place.


1.      http://chestjournal.chestpubs.org/content/98/6/1388?ijkey=7401141a409d505da84eaca67df498c09826d1c8&keytype2=tf_ipsecsha&linkType=ABST&journalCode=chest&resid=98/6/1388
2.      http://www.bmj.com/content/324/7334/387.abstract?ijkey=627eb37a84ed65585ace104c27ed907ef3177b72&keytype2=tf_ipsecsha
3.      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687898/

Autumn's Birthday

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Outside the HospitalPatiently waitingBig sister arrivesHere she is!All smilesBig girl!Mommy and AutumnClassic C-Section pictureShe came out crying and didn't stop till she ateSisters meet for the first timeLoveNana and her 11th grandchildPapa and AutumnMama Elsie and Autumn"Little Nanny" and AutumnGrandpa and AutumnBeautyMommy and AutumnGrandma and AutumnUs girlsMimi and AutumnAunt Lezli and AutumnUncle Robert and AutumnPapa Harry and Autumn

We are so blessed to have another beautiful daughter! 

Screening Results....Just in time for Christmas!

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So tomorrow is the day for results on the PKU test which screens for many things among those is Cystic Fibrosis.  We knew our daughter would have a 25% chance so this day has been weighing on our minds.  We have been praying for a long time about this and have faith that she will be CF free, but the lingering doubt is scary at times.
We have looked for all the "classic" CF signs and she is without a single one thus far.  We have even tasted her skin and she is not salty like her big sister.
We will know tomorrow morning and hopefully get the best Christmas gift ever!
I'll update as soon as i can!

Trying to Catch Up!! Christmas 2011~

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Wow I haven't blogged since before Christmas!  I have missed so much on here lately it's hard to know where to start!
After getting the amazing news that our 5 week old Autumn was CF free I haven't done much updating!  That news is still sinking in....I remember at this age doing manual CPT in the NICU with Ayla and it's just amazing to know that I don't have to do any of that!
(Autumn with our Amazing Pediatrician)We had a great Christmas the four of us.  I don't have any pictures of it! I know pretty bad-I charged all the camera's the night before and when I woke up none of them charged and I ended up using my cell phone (boo!)
I have a few pictures of the girls but none of us together! I still don't have a picture of our new family-I really need to get on that!
 (How Autumn spent Christmas!) (Ayla in her Christmas Dress) (Our girls! This was the best I could do ;0)(Christmas Morning!)How we managed to get Christmas done this year is beyond me!  The last few weeks of 2011 was a major blur for me! But a definite great end to the year!  We had so much to be thankful for and were blessed beyond belief!

Autumn-Faith Is 1 month old.. (kindoph)

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Check Me Out! Mom was slacking and just posted my pic because I am actually 6 weeks old now!

What I'm Up To:
I've been holding my head up for a couple of weeks now
Cooing
Laughing
Loves to be held-Dont think about putting me down!

What People say about me:
That I look like my mommy but also my big sister
"Wow, look at all that hair!"
That I have a tan & long fingers!

Other Stuff:
Mom was thinking I may have a touch of Colic because I get really fussy sometimes but there's really no pattern to it-so she's not sure- I'm already tough to figure out!
I am eating about every 3 hours during the day and 3-4 at night.  I'm nursing totally and doing really well with that!
I'm not letting mom get much done or get much rest these days!
I'm wearing size one diapers and I have shapely legs and filling out "nicely"
I really love my big sister, ever time I see her face I just smile!

Note from Mom:
Dear Autumn,
I am so happy to have you in our family, you are so beautiful! I love your morning smiles and the little noises you make.  I love how happy you are to see your sister and how much you love being rocked by your daddy.  I am so glad your mine!
Love, Mom

Ayla Update

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Ayla is doing great! She just started back to school for the 2nd half of the school year.  She has done so well with school, she far surpassed my hopes for her this year.  I am so glad we decided to put her into school this year.  It's amazing how much she has learned in such a short amount of time.  We are already thinking about next year, starting Kindergarten and where we will send her.  It's going to take some getting used to 5 days a week.
(Ayla with my cousin Hilari)Health-wise Ayla is also doing great, we just had CF and GI clinic this week and got great reports at both.  She has grown so much she is in the 75% for weight which is awesome!  She finished a long stint of antibiotics and inhaled meds to make sure the Psuedo bug was gone.  We are waiting on culture results to see if she's still clear.  If she is Dr. S wants to do a bronch (first one ever, eek) to get a good culture and make sure her lungs are pristine.  So we are awaiting that news.
GI clinic at Shand's was great as well, they basically said Ayla is a walking miracle and could not be doing better.  Her liver enzymes were all normal and we don't go back for 6 months!
We just thank God everyday for our little miracle baby!  Ayla is such a blessing and energetic little girl, she makes each day so much fun.  Did I mention she was funny??!! She is hilarious and sings like a bird!
I can't believe she will be 5 in just a couple of months! Where does the time go??

Autumn-Faith is 2 Months Old!

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What I'm Up To:
I am loving sleeping on my tummy
I love to be held
I love my sister and always find a smile for her
I am cooing all the time these days See Video of Me

What I'm Wearing:
I am wearing size 2 diapers and 6 month clothes (mostly)
I love comfy clothes and lots of bows!

What People Say About Me:
That I look like my sister but there's something different about me
That I am so sweet

Other Stuff:
I love white noise machines
My legs are so chunky and cute
I've settled into somewhat of a routine now, I am much happier these days! I love to look around for about an hour after feeding but then am ready for a nice nap in my bed.  Nights are going better now-I go down after my 7 o clock (ish) feeding and mom gets me out of my bed for my 1030 feeding then I get to lay comfortably on my tummy all night in mom and dads bed.  I usually wake up once or twice to feed at night.

A Note From Mom:
Dear Autumn,
I am enjoying being your mom and watching you grow. It's so neat to watch you change each and every day.  My favorite time with you is early in the morning or in the wee hours of the night when you coo and smile at me.  I am feeling like I know you better and better each day and look forward to spending time with you and your sister.  We all love you so much and couldn't imagine our family without you! Can't wait to see what next month holds for you!!

Love,
Mom

C Diff-Again!

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Well C-Diff has reared it's ugly head again.  Ayla has been on so many meds lately it's really no surprise.  She was put on Flagile and hopefully will culture negative after the first round.

We are going to TN to visit family this week so I hope that she will feel well.  C diff affects everyone differently but for her it's basically oily stools and tummy aches.

We started a new probiotic...."Garden of Life, kids Raw" so hopefully adding this to her daily regimen will help.

I will keep you all posted.  Her Bronch had to be postponed since she had to be put on meds for the Cdiff.

Autumn Faith is 3 months old!

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What I'm up to:
I am drooling everywhere
I love sucking on my hands
It looks like I may be getting a tooth
I'm laughing and holding my head up
I scoot my legs up under my butt

What I'm wearing:
Mostly 6 month clothes
Size 3 diapers
Lots of cute headbands

What People Say about me:
That i'm starting to look more like sissy
That I'm tiny (although mom and dad love my rolls)
That I'm strong

Other stuff:
I got lots of shots last week and weighed 12.7 and was 25" long! 95th% for height!
I'm starting to play with toys and gaining hand control.
I went on my first road trip to see my cousins in TN
I am so spoiled- I must be held!

A note from mom:
Dear Autumn,
This month you have really gotten your personality. I love watching your eyes and face light up with each new experience. You are so beautiful! Your sister loves you so much and helps mommy take care of you! You have really settled into your routine and are so happy! Your daddy really loves his time with you at night- he loves putting you to sleep! We couldn't be more thrilled and look forward to what next month brings!

Ayla Update: Crackles, blockage, Cdiff =CF Sucks

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Ayla had tested positive for c-diff a couple of weeks ago got on Flagile and once she was off tested negative.  We were happy that the meds worked but remained skeptical since she has gotten in back pretty quickly in the past.
She got on Augmentin pretty soon after finishing the Cdiff meds for a cold and upon finishing those, cdiff symptoms seemed to return or "flare up."
With her cold she had a "dry cough" that seemed to hang around and as of sunday turned into a phlegmy cough.
So considering the stomach pains accompanied by oily frequent stooling and the cough I decided a trip to clinic was imperative.
Upon arrival her weight was down a little (never a good sign for a CF'er) she ordered a throat culture which we always get at clinic.  Talked for what seemed like forever about Ayla and her behavior.  We talked about Cdiff and the bronch that we have been unable to get done since she can't stay off antibiotics for long enough lately....and of course school (always doubting my decision to put her in).
She began examining her and heard a crackling in her lungs.  She has said she's heard this before but never seems concerned about.  Another CF mom on facebook said that her clinic takes this much more seriously and I will be asking some questions about this.  She also felt some "hard spots" when examining her tummy.  Ayla complained of pain when she touched certain areas so the Dr. ordered a xray of her abdomen.
We went over and my little "pooper-trooper" pooped on demand for me.  She has gotten rather good at doing this for all of the stool studies she has done.  Pretty sad but something I appreciate since we were able to drop that off while waiting for the xray to be done.
She had her xray and we got back in the car to head home after a 3.5 hour appointment. Before we got on the interstate the Dr had called me with disturbing news about her xray. She said she had a TON of pooped in there.  She said she had a lot of gas on one side (explaining her tenderness) and she was worried about her colon on that side (whatever that means) When things like this go on it makes me realize how much I need to educate myself.  She was worried about blockages and wanted her to do an adult dose of Miralax.
We did that at 7pm last night and it's 8:40 am and no poop yet.  She is looking for her to have a large stool and then we have to go get another xray to see if it all came out.  If not we are going to be admitted to get her cleaned out.
Then the next decision I will have to make is where to take her.  Shands vs Nemour's.  Since we have GI at shands and CF at Nemour's it's not an easy decision.  Although this is not liver related I still prefer shands GI to Nemour's team.  But Nemour's CF team I have been happy with.  I always get excellent care when we go to Shand's so that will be just weighing which specialty is more important to care for at that moment.  Since her culture could come back and show something she needs IV antibiotics for we need to be thinking about that.  Not that Shand's CF team is not the best of the best but let's be real being an hour from home vs four hours from home is a real concern.
Some concerns of mine:
My husband owns his own business and if he doesn't work we don't get paid
I am nursing Autumn and am basically a control freak about Ayla's care and want to be the one who never sees sunshine until she does when hospitalized and that won't be possible since we can't all stay with her.
How will I do that will Autumn and Nursing? Will there be someone who can help me? Ayla can not be left alone?

Hopefully.....none of these worries will be necessary....we will see what today holds....Ayla is complaining of her tummy hurting this morning and Dr. said that isn't a good sign....

Details to come -prayers appreciated....

Ayla Update: Results

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We have gotten some good results from most of the tests that were ordered.
C-diff was Negative
Tummy Xray showed Improvement
The Chest X-ray was not clear, and accompanied by the cough she presented this had the Dr and myself concerned.
The Throat Culture is still early but showing Normal Flora
We talked with the Dr. on Wed night and have a plan to admit for a tune up next week sometime.  And also do a bronch along with Picc line upon admission. Most likely have a few days in hospital and then come home on home iv's to finish out.

Ayla's tummy has still been bothering her but getting better each day.  Yesterday she attended school and got to take graduation pictures with her class.  After I picked her up we went to the park and she played hard for a couple more hours.  She was asleep during her night time treatments-she slept very good and didn't cough.

This morning she has not coughed as much either.  I don't know if this will affect our plans for admission but unless her lungs sound better I don't see things changing.  I really want this bronch to happen- it's funny I was so reluctant about it at first scared of the procedure but now I know how vital it is to her health to know whats going on deep down in her lungs that I am almost excited about it.
I guess God has a way of preparing you for things one way or the other.

I have a call in to the nurse to get the particulars about next week for planning purposes.  We have a plan to stay at the RMH and I will stay with her all day and once she's asleep for the night take the baby back to RM and nurse and get her through the night.  I now have 2 children who need me and while this is very different from other hospitalizations we have had...I think it will force me to rest and in the end will be just fine.

Hopefully the nurse calls me back and hopefully her culture remains normal as it finishes out the next few days of incubating or whatever they do with it.  Hopefully her lungs have improved and her tummy continues to do just that.

For now we wait and see....

Answered Prayers! New plan!!

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We just got a major answer to prayer! Ayla's culture is done and did not show any infection (which I am totally surprised about) not to mention she slept soundly for 11 hours last night and didnt cough. She has not been coughing today either! The drs nurse called and said in lieu of this she doesn't think it's necessary to admit for a tune up! She will however go in for a bronch on Tuesday at 8 am to look at her lungs and take another good culture. Now we need more prayers for clear airways and gorgeous lungs on Tuesday!

Bronchoscopy Update

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Ayla had her bronch done on tuesday March 13th.  She was such a trooper and knew everything that was going to happen to her and never shed a tear.  I hate how strong she has to be at only 4 years old! But she is SO strong and will continue to have to be strong throughout her life.
This is a picture of her before she got her "silly juice" she was such a joy!
This is a picture of Ayla after the "silly juice"
The procedure went really well and Ayla's lungs looked good! The Dr. said better than she expected.  She did have some damage from reflux in her airways.  So we are working on getting that under control.  We waited to hear about the culture and heard today that everything was normal.  Praise God!

Ayla is still coughing some (more than normal) and we are hoping that starting her on zithromax will help with her tummy pain and cough.

Ayla took a little longer to wake up after her bronch and she woke up MAD! She was flailing her arms and legs around and was very agitated.  She finally vomited and got a little calmer after that.

This is her after she got into the car.  She passed out and after an hour was rare-ing to go!! Been herself ever since- we are so grateful.

Autumn is 4 months old!

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What I'm Up To:
My drooling has turned into a falling river of spit!
I have found my voice and love making new sounds!
I also figured out that my feet taste and feel pretty neat!
I am still working on a bottom tooth or two but no sign of them breaking through yet.
Not sleeping much at night, I am a super party animal!
I got my ears pierced so that was fun (not!)


What I'm Wearing:
Still in size 2 diapers (they are getting snug)!
mostly 6 month clothes
some of my 3 month stuff still fits me
lots of ridiculous hair bows and headbands


What People Say About Me:
That I am looking like my daddy but mom doesn't think so!
That I am a happy baby
That I have the cutest chunky thighs that don't match her petite body
That my ear rings are gorgeous


Other Stuff:
I can take my paci out of my mouth but putting it back in is another story!
I can hold lots of toys now and I mostly use my right hand
I went to the beach for the first time
Last time mom took me to the Dr I weighed 13.7 (about a month ago)
I am loving mommy and need all her snuggling time


A Note From Mom:
Dear Autumn,
I can't believe you are 1/3 of a year old already! My how time flies!  I love listening to you make your sweet sounds and love seeing your happy smiley face each day!  You and your sister mean so much to me and I love how you look at her.  Mommy would like it if you would start sleeping sometime soon for me but I will love you even if you don't.  You are such a joy to our family and so stinking adorable!  It's hard for anyone to take their eyes off you.
I love you so much! Can't wait to see what's new with you next month!!