August 12, 2014: Step by Step Injection Training with Photos

We are doing shots on Cammy's right side on even days and left side on odd days.  The arm is in the morning and leg at night.  The location for the arm is the tricep.  The location for the leg is mid-thigh, between the front and the side.

Injections should be given 12 hours apart (+/- 2 hours).

She must have a meal or drink immediately before the injection.
Record the meal time on the log.  

The vial must be refrigerated. Take it out of the refrigerator 20 minutes before the injections. Make sure the vial is labeled correctly: 1 of 6.

Wipe the top of the bottle with an alcohol wipe for 10-15 seconds to steralize it.

Draw plunger back to 20.
Place needle straight into rubber top.  

Turn the needle and bottle upside down.  Push the air from the syringe into the vial.  Pull back to 11 units (or whatever the dosage is at that time period).  Check for bubbles.  If they exist, tap the syringe with your finger until they rise to the top.  Recap the needle without touching the tip of the needle.

Clean Cammy's injection site with an alcohol pad.

Pinch her skin. Inject on a 45 degree angle with the long side down and the bevel (hole) is up.  Once you inject, let go of her skin and finish the injection.

Recap the needle and dispose it in the Sharps container or an empty laundry bottle.

Record the injection time on the log.  

30 minutes after the injection, test her glucose level.  This only needs to be done the first 3 days of every dosage change. 

Testing Blood Glucose Level

Take 1 test strip from the container. 

Insert the test strip into the meter in the direction of the arrows.  The meter will turn on.

The code the display should match the code number on the test strip container (113).

Wash Cammy’s hands.  Clean the fingertip area with an alcohol pad.

Hold the lancet device firmly against the side of one of her fingertips and press the release button. 

 Squeeze her finger to draw blood.  Wipe the first drop away with a tissue. 

Touch a drop of blood to the tip of the “window” on the end of the strip.  Do not put blood on the top of the test strip.

The results will appear in the window. 

If the number is 60 or below, call us and immediately give her juice or a sugary snack.

Record the Glucose Test Time and Glucose Level in the binder. 

Dispose the test strip in the Sharps container.  

To load the next lancet, twist the plunger one-quarter turn forward until it stops.  When the counter shows a number 1, you are at the final lancet.  Change the drum after the final use.  

Enjoy the smiles.  It doesn't hurt Cammy.  She knows you are trying to help her.

August 8, 2014: Living in Fear

I live in fear. 

A year ago, Cammy's pediatrician advised us to always video any behavior that was not normal to show him.  This morning, we had quite a scare.  I rushed Cammy to his office and videoed her odd behavior in the waiting room.  
Around 8:10 this morning, Cammy threw up, started to sweat bullets (she rarely sweats in general), turned white as a ghost, her eyes were closed and she didn't respond to her name.  Her body seemed to shut down, but she was still breathing. It was the scariest thing I've ever seen from her. I called the Boston crew to report what happened.
With the injections, we need to give her something sugary before the injection to make sure her glucose levels do not dip.  Her levels have been normal so far.  I was already nervous that Cammy was refusing breakfast, even more so, her drink. When she refuses to eat or drink, it usually indicates she does not feel well.  But I was so nervous to give her the shot on an empty stomach, I was forcing it in (bad move, mom, I should know better).  The Boston crew thought she had a little bug instead of a reaction to the shot.  They wanted me to take her to the doctor to see if she had a virus from all the traveling we had done.  This still didn't make me feel any better about what I was seeing.
I was about to call an ambulance when my sister arrived to take Ryan and Cammy responded to her when Joanne picked her up.  Cammy's eyes opened and she tracked me. When we got to the doctor's office, she threw up again, which got our appointment moved up quicker.
This video is in the waiting room at the doctor.  Her eyes are closed and her leg is twitching.

 

Cammy's blood pressure was low, she didn't have a temperature and her tonsils were enlarged and red.  After a few minutes (and Sesame Street on the IPad), her eyes opened and some color came back.  The strep test was negative, but the pediatrician didn't like how she looked still, so they sent us to the ER. The doctor called ahead to tell them we were on our way and even gave her the numbing cream at her office so it would have kicked in by the time we go to the ER for blood work.   

At the ER, they took blood and urine.  She finally smiled at one of the nurses and started tracking more people with her eyes.  The IV gave her more color in her body.  They took a chest X-ray. The blood work showed elevated white blood cells.  She's been on an IV since 10 am.  She has since perked up back to her normal self, but they want us overnight to make sure she remains at her baseline.  Hopefully all levels will even out and we are home tomorrow.  Just a bug.  An IV of fluids would recharge our little superhero.  

I was actually relieved to hear it was a bug because all morning I was worrying it was a side effect of the injection.  Cammy had tolerated them the past 3 days, then this strange incident happened 40 minutes after her morning injection.  I was crying, thinking "What did we just sign her up for?"  "What did I just do to her?"  concerned this was due to the injection.  We think she caught a little bug from all the traveling. 

The evening injection went smoothly and her glucose levels were normal.  

The next morning, Cammy ate some pancakes with syrup before her shot.  Her glucose levels were normal.  Cammy was discharged by noon.   

August 5, 2014: First Shot!

We got to the hospital at 8am.  Cammy had a quick physical before her first shot at 9.  We made sure Cammy had a little sweet treat before her shot.  We need to make sure she has some sugar in her because a dipping glucose level is a concern.  We are to take her glucose level 30 minutes after the shot for the first week.

The first shot went to Billy.  Cammy didn't even flinch!  She took it like a champ.  Ryan was on standby for big hugs. Her glucose level was within the normal range 30 minutes after the shot.  SUCCESS!  #Phew  #PlaceboOrIGf1  #BeTheChangeYouWishToSeeInTheWorld

Dr. Kauffman came in for a couple more observations and tests.  Cammy had to choose between 2 objects.  We were supposed to bring in an object that she loves, so we brought in one of her monkeys, Pickles.  When given the choice between Pickles and a Little People Princess, she quickly chose Pickles each time, no matter how he placed them.  Ryan, on the other hand, would have chosen the princess.  Dr, K. seemed to be impressed with how quickly Cammy can choose with her eyes. 

 

We ran into Alyssa and Susan, another Rett family in the clinical trial.  This is Alyssa final visit, she will be all done with the trial after this visit.  We feel like she is passing the torch to Cammy who is just beginning.  They are extremely sweet and positive people.  

 We packed the medicine (or placebo) in a cooler, said our goodbyes and headed back to the hotel to pack up the car.  So long Boston, until October.  

Our original plan was to stay overnight at my aunt and uncle's house in Rochester again, but we left earlier than expected and were anxious to get home, we bypassed Rochester and drove a few more hour to Warrensville Heights, Ohio.  Along the way, we had to give Cammy a shot.  Nothing classier than giving a shot in a family restroom at a rest stop.  We notices a Sharp's needle container on the wall in the family bathroom.  We had never noticed anything like that before.  We made sure everything and everyone was as clean as possible while giving her the shot.  Her glucose levels were normal 30 minutes later.  Everything was going smoothly. 

Ryan was excited to spend one more night in a hotel.  The rest of us were over it. 

We arrived home around 2pm on Wednesday.  It was a mandatory rest period for everyone.  Cammy, Billy and I were thrilled to lay in our own beds while Ryan was so excited to play with all her toys again.  We came home to a few packages, a beautiful bouquet of cookies from friends and a lot of mail.  Thank you everyone for your love and support. 

 #WeMadeItThroughRoundOne
#CammyCanIsBostonStrong

August 4, 2014: "Ryan, sit on the bed, eat your donut and watch TV"

We have officially been crammed in a hotel room long enough. We have been up for hours, trying to feed Cammy while Ryan is jumping on the bed. These words just came out of my mouth 'Ryan, sit on the bed, eat your donut and watch TV. I expect you to be a little smarter after watching this.". #MomOfTheYear #AreWeHomeYet #PassTheCoffee #TVandDonutsMakeYouSmarter
#ComeToMeIfYouWantToNailThisMomThing

Coming into the office to more mail is an awesome way to start testing! Thank you! Mail all the way from Australia too!! Thank you everyone.  This has helped us more than we could explain. 

Cammy had more autonomic testing.  I think has been her favorite part of all of this. She gets to sit and watch Sesame Street for 90-120 minutes, uninterrupted. She had her skin fold taken and did a nail bed test. Billy and Ryan went to the playground and had McDonald's.  

Q sensors were put around Cammy's wrists for about 24 hours.  They track her hand movement as well as anxiety, stress and pain through the temperature of her skin.  We have to log anytime she falls asleep, eats, drinks, goes to the bathroom, washes her hands during these hours of wearing the sensors.  

After a quick morning at the office, we packed our bags so we would be all set as soon as the day at the hospital was done.  
We jumped on the Green Line to go to Union Oyster House for our "fancy family dinner" on our final evening in Boston. 

 

We definitely did not think about "America's Oldest Restaurant" being handicap accessible.  We did avoid the hour wait for a table once they saw Cammy, but we could only sit on the first floor, which is the bar area.  They made an exception and let us pick from the entire dinner menu rather than the first floor mini bar menu.  Thank goodness Cammy did not have to go to the bathroom while we were there because Ryan and I had to go up 3 flights of stairs for the tiny 2 mini stall bathrooms.  Cammy and Ryan devoured their spaghetti.  Billy enjoyed his swordfish and I loved my seafood pasta.  

Heather told us about Modern Pastry, so we made our way over there to see who had the better cannolis: Mike's or Modern Pastry.  The line was just has long for Modern Pastry.  Cammy voted that Mike's was the better cannoli!