A Quarterly

Newsletter of the

Children’s

Hospital/UAB

CF Center

Volume 4, Issue

4 4/11/2014 Connecting Families in the Alabama Cystic Fibrosis Community

UAB

Childrens of Alabama

CF Center

Newsletter

*********

Spring 2014

Volume 7, Issue 1 Parent Perspectives: 1st admission with a 3 year old

. My son, Colin, is 3 years old and has CF. This past fall, he began getting sicker and a bronchoscopy was scheduled. It was a scary time for us as we didn’t really know what to expect. The doctors, nurses, & staff were all amazing and that was very helpful. We did the procedure so we could get a better idea what was happening in his lungs. Things looked “icky” so we decided to go ahead with the admission. By no means was the deci-sion only on us, but we did have a voice in the matter and that was comforting. We have an older son (age 5) and we didn’t want to disrupt his life, so my husband and I decided to split the time at home and hospital. We both stayed the first 2 days with Colin while my parents kept big brother back home. We had been told to expect any-where from a 10-14 day stay.

Our family lives 4 hours from Birmingham so it was a challenge trying to figure out what we would need for a possible two week hospital stay with a 3 year old. I knew that the hospital provided some entertainment for their patients (toys, books, movies,

video games, Xbox/DVD player paints, coloring, blocks, etc). We packed a few of his favorite toys, games, and books just to be safe. I also packed his vest and all his home meds. He ended up only using his enzymes from what I brought from home because the hos-pital pharmacy didn’t carry his brand. I was so glad that I brought his home medicines. I did bring his jar of applesauce, but it didn’t travel well and there are strict rules about storing foods that come in contact with the patient’s room in the fridge in the commons area. So we had to end up using some from the hospital and he hated it. He refused to take his enzymes with it so that was an interesting battle with a toddler. Next time I will unquestionably pack individual cups of his preferred brand of applesauce. We also forgot his favorite blanket and his pillow. The hospital pillows and blankets lack luster and I advise you to pack your own. I also didn’t pack many clothes for Colin, thinking we would just wear the gowns. I did end up having some sent up with visitors from home so he could be more comfy. Visitors are allowed and let them come! I wish I had packed more food for him and myself but I ended up eating his leftovers. He is a picky eater so I would order a variety for him to choose from. The room was pretty spacious and my mini fridge would have fit perfectly under the sink. It’s definitely going with us the next time so there is no debacle about applesauce or any other foods! Evidently there are a few mini fridges on the floor but just a few, so you may or may not get a room that has one.

The first few days went by quickly settling into a routine and figuring out how to work everything in the room. By day 4 Colin was literally bouncing off the walls. The antibiotics had kicked in and he was beginning to feel better. He is a VERY active boy and loves to play and romp, even when he doesn’t feel his best. The large window seat saved us. We watched for trains, planes, trucks, emer-gency vehicles and pedestrians every day. We did a lot of imaginary play and “saw” lots of bad guys, robots and giants walking around outside of the window and Colin and I took them down one by one with our handy dandy finger guns! Between fighting and hiding from bad guys, building blocks, and Wreck It Ralph (14+ viewings) I kept him entertained but I was exhausted by the time it was over. Thank goodness for the amazing nurses who also got into the imaginary play with us. It was awesome the way they interacted with him to make it as “normal” as possible. I am forever grateful for them.

For myself I packed my crochet, laptop and reading tablet. Colin did become weary of his therapies. He has always been compliant with therapies, but having to do chest therapies 4 times a day plus extra antibiotics and being trapped in a hospital room caused him to rebel a little bit and I can’t blame him. The emotional stuff of the admission didn’t hit me until nearly a month out of the hospital. At the time I soldiered on for my son but after it was over there were a lot of emotions and feelings to deal with. I’m blessed with an understanding and loving husband, wonderful family, and a loving church. ~ Rhonda

Pictured above: Jonathan, Rhonda, Carter and Colin Spears

Page 2 Courageous Friends

Transitioning from the pediatric to the adult CF center is an important move for people with CF and

their families. Your CF team wants to make sure you have all the information you need to make this

transition as smooth as possible. The following are important facts about our transition program:

Our goal is to begin seeing patients alone in clinic at age 14. We do this in order to make sure

that the patient can answer questions about their health without the assistance of their par-

ents. We hope this helps the patient take ownership of their health and learn to advocate for

their needs. We will bring parents back to meet with the physician at the end of the appt.

We have a transition clinic twice a month and our goal is to see all patients at age 16 in

this clinic. The doctors for this clinic are Dr. Brad Troxler and Dr. Steve Rowe. This is

very similar to our other CF clinics but we focus on transition issues such as providing infor-

mation about the adult CF center, talking to the patient about making plans for after high

school (i.e, college or work), and encouraging patients to take responsibility for their CF care

(i.e, knowing medications, ordering medications, calling when they are sick or need appoint-

ments, etc).

You will be transitioned to the adult CF center by the time you turn 21 years old. Transition is

optional at 18 and mandatory at 21. If a patient is ready to transition before 21, we can

help with the transition. If you decide to wait until you are 21, we will schedule your first ap-

pointment with the adult team around your 21st birthday.

You will receive a transition packet before you make the move to the adult CF center at

UAB. It includes information about the adult center, insurance issues, preparing for college,

and other resources available for adults.

We offer a tour of the adult center to all patients who are in the process of transitioning to

the adult CF center. Your social worker will accompany you to the adult CF center and you

will be able to see the inpatient and outpatient facility as well as meet some members of the

adult team.

The adult and pediatric CF teams work closely together to make sure that our patients have a

smooth transition. The teams have a quarterly meeting to discuss upcoming patients and

any issues.

If you have any questions about the transition process or would like to arrange a tour of the adult CF

center at UAB, please do not hesitate to contact Staci Self (205-638-5494) for more information.

What is Transition clinic: the What, the Who, and the Why ??

Are you ready to transition?? Transition checklist

I schedule my own clinic visits

I know all my medications

I take my medications and do therapy without reminders from my parents

I am responsible for getting refills for my medications

I understand how drinking and smoking affect my health

I understand how CF affects having children

I understand my insurance coverage

I have taken a tour of the adult center

Page 3

Danielle Lawson is a senior at Montavallo High School. She was selected 2013 Homecoming Queen by her peers. She will graduate in May 2014 and has plans to attend college at UAB. Danielle plans to study nursing or a health-care related field.

A Patient Highlight

Strawberry Banana Smoothie

Ingredients: ½ c. whole milk

½ c. heavy whipping cream

1 banana

1¼ c. strawberries (fresh or

frozen)

¾ c. lemon sherbet

2 tbsp. dry skim milk powder

Combine all ingredients in a blender.

Blend until smooth.

Serves 2; Serving Size: 12 oz

Nutritional analy-

sis (per serving):

432 calories

8 protein

26 g fat

115 mg sodium

250 mg calcium

For more CF recipes visit: http://kidshealth.org/parent/recipes/cf_recipes

From our Kitchen to Yours

We have had a lot of recent changes at Childrens of Alabama CF Center since the expansion into the Benjamin Russell Hospital.

One change that will be coming soon will be our clinic locations. All CF clinics will be moving into a new space in the McWane Building (main outpatient clinic mall area). You will need to park in the 7th Ave Parking Deck. We will let you know when this will start.

We will continue to have pseudomonas positive and pseudomonas negative clinics.

Childrens of Alabama

1600 7th Ave South

Lowder Building, Suite 620

Birmingham, AL 35233

Office phone: (205) 638 9583

Office fax: (205) 975 5983

https://www.childrensal.org/cystic-fibrosis

Childrens of Alabama/

UAB CF Center

Future Topics, Questions, Ideas??

We want to hear from you! If you have some-

thing that you would like addressed or some-

thing you would like to know more about in

the newsletter, please send an email to:

Kelli.Lachowicz@childrensal.org

My name is Joy Hardy and I am

the Child Life Specialist for the

Pulmonary team. I have been at

Children’s since 2002. I am a Au-

burn graduate with a degree in

Human Development & Family

Studies. In my spare time I enjoy

reading, scrapbooking, and being

with friends and family. I have

3 nephews, so much of my time is spent at the

ballpark. I have had the opportunity to travel on

medical mission trips the last few years to Peru

and Ecuador. I have also been able to use my

child development skills in working with Lifeline

and their partnership with orphanages in China.

My biggest role is to reduce stress and anxiety

that may be associated with hospitalization. I can

prepare families for surgeries & procedures in a

way a child can understand, accompany child to

surgery, provide bedside activities for children,

provide sibling support, and advocate for family

centered care.

Getting to know your CF team

Our Chilean Visitors

We recently had a team (physicians, nurse, and

dietitian) from Santiago Chile visit our CF Cen-

ter. They spent 2 weeks with our team learning

how we care for our CF patients/families. A group

from UAB/COA will be traveling to Chile in a few

months to continue our partnership with them to

improve CF outcomes in Chile.