Ellie's First Post

Hi, My name is Ellie and I am starting to blog for the first time :)

This is me. 

I am 10 years old, in 5th grade and live in Massachusetts. I have a dog named Tillie and a brother named Will.

10 years ago on today my family brought me home for the first time!!!!!And my mom and dad just showed me the video of my mom moon walking out the door of Boston Children's Hospital with me for the first time. My parents can be strange!! WHO WALKS BACKWARDS OUT OF A HOSPITAL??????

I have broviac CVL  and I am the 23rd person on Omegaven, and I am still on Omegaven.
I went to clinic this week and I had a DEXA Scan. I had to lay on this table and a machine went over me. It was not scary!! Clinic is NOT SCARY!!!
 I enjoy playing Minecraft, watching television, and horse-back riding. Do you have Short Bowl too??  I'd like to hear from you.  
More to come, see you later!

Hole in the Wall Gang Camp, Success!!

Ellie loved it!  We went to go pick her up and she was so happy we wished we could have left her there for another week.  There were 7 girls in her cabin ranging in age from 7-9 and a wide range of diagnoses.  She loved all the girls and can't wait to see them next year. From what she told us, it sounded like there was a party almost every day with different themes.  This picture is from the Carnivarty.  (Carnival+Party)

She swam in the pool 2 days, learned archery, caught her first bass, built the Santa Maria out of wood, took cooking classes, completed a ton of craft projects, performed Cotton Eyed Joe dance on stage with her cabin and did a solo demonstration of animal noises for the whole camp.

On the last night she was awarded a cooking award for a banana bread she made while she was there. Then her cabin later that night gave her an award call, Princess Energizer Bunny, for her endless energy.  Which if you have met Ellie, you know this was the perfect award for her.
These are photos of her with some of the counselors.

The medical team was amazing.  They set up her TPN and Omegaven at night, hooked her up, took care of her Omegaven throughout the night, got her line ready for swimming (twice) and had no leaks.  They kept her up to date on all her medications and oral fluid intake and never need PRN hydration.   She had a primary day nurse named Rose that she really bonded with and a night nurse, Kara that she loved as well. 

 

Ellie and Rose

And with the help of the Danielle the Dietary Intern, she tried some new foods and found she loved them.

She had a bed in the Yellow cabin but spent her nights in the Moose lodge, the  lodge that is attached to the clinic.  This is because her Omegaven bottles need to be changed at night.  But she befriended the other girl staying there and they had sleepovers in each other's rooms a few of the nights.  

Ellie's bed in the Moose Lodge.

Over all it was a huge hit and she wants to go back for as many summers as possible.

Will had a great time while she was away.  We tried to keep him as busy as possible and made sure he had a great week too.

It was very odd not having Ellie around.  The first few days we walked around positive that we were forgetting something big.  Nighttime was the hardest time, we couldn't shake the feeling that we should be doing something.   We made it just over 48 hours before we called to the camp to check in on how she was doing. Next year will be easier.

We are incredibly grateful to everyone at Hole in the Wall Gang camp that make Ellie's week so much fun.  Now we leave you with the Hole in the Wall Gang Camp song Ellie taught us.
This camp was good to me! 
This camp was good to me!
Thank you Paul for this Hole in the Wall!
This camp was good to me!

Ellie Goes to Camp!

I can honestly say that I never thought we could be saying this, but Ellie is at sleep away camp for the week!   She is at The Hole in the Wall Gang Camp in CT.  It took a ton of planning, scheduling and packing.  The last time Ellie spent a night without one of us was Thanksgiving 2006 and she was inpatient, with Sue our favorite nurse, at Boston Children's Hospital.  

I thought Ellie was too young for sleep away camp.  But she disagreed.  Gib got the paper work going and now we are without Ellie for a whole week. She has a team of counselors, nurses and doctors taking care of her for us.  We spent the past week packing all of her medical supplies.  This tool helped us get ready.  

We hit the road at 7 a.m. this morning with a very excited little girl. We had to remind her that she needed to sleep the night before camp.  If it was up to her she would have stayed up all night asking us questions. 

We spent 3 hours checking her in and explaining her medical stuff (TPN, Omegaven, G-tube, meds, oral fluids, diet and dressings) to the team.  Then took her to her cabin.

 Ellie is in the Yellow cabin.  She actually has to sleep in a a lodge that is attached to the hospital because of her Omegaven bottles needing to be changed at night.  But she gets a bed in the cabin and will spend all her time in the cabin and then sleep and get dressed in the lodge.  So she gets 2 beds.  It does make her different than the other kids, but she was very happy to have 2 beds.

 Overall Hole in Wall Camp is like a typical summer camp on steroids.  And that is coming from someone that spent 4 summers at summer camp and another summer as a counselor.

 We left Ellie in her cabin and went to the family lunch.  Then hit the road home.  Needless to say both Gib and I cannot believe that this is really happening.  I think tonight will be when things really sink in.  We will be able to sleep through the night, there will be no beeping pumps, no medications to get ready, no formula to mix and for the first time since 2006 neither one of us is on call.

The fact that Ellie is gone hit Will halfway home from the camp.  But, a well timed ice cream cone solved the problem.

If you want to send Ellie a letter at camp, email me at abrogan@thriverx.net and I will send you her address.

Resources for Kids with Central Lines

There are tons of resources out there for kids with central lines, Short bowel or on TPN. (Adults have used them to explain their central lines to younger family members too)  I have helped my home infusion company produce many educational resources but my favorite thing they have produced is their children's books and the Strap Wrap.  If you are interested in any of these books or the strap wrap just email Abby at abrogan@thriverx.net

My Special Line: This early reader or read-to-me book addresses the importance of good line care in a simplified manner with rhyme and repetition. The book’s message is that a central venous line is special and needs to be kept safe, clean and dry. 

Let's Learn About Central Lines: This new book for elementary aged children discusses central lines, basic central line care and how children can begin to take an active role in caring for their central venous line (CVL).

Including:

•      What is a CVL

•      Who might need a CVL

•      How they can help keep their CVL clean and dry  

HENRY IMAGINES, An Adventurous View of Short Bowel Syndrome: 

This is book was written by a father about his son with Short BowelSyndrome (SBS) - a condition many children and adults are living with all over the world.

      By using his imagination, Henry takes the trickier parts of everyday life with an ostomy, G-tube and central line and turns them into an adventure! If your child or a young person in your family, school or neighborhood has this condition or has an ostomy, central line or G-tube this book is a great way to help them learn and have fun.  To order your copy visit: www.createspace.com/4806456

Strap Wrap: A medical free alert device for children or adults on IV nutrition support. 
The strap can wrap around a seat belt strap,  purse strap, diaper bag or backpack strap.  The straps contains medical a short medical history, medications, allergies, Dr. contact information and emergency contact information.  It was created a grandmother of a consumer of BioRx the parent company to ThriveRx.  

Watch this video to see the Strap Wrap in the news:  http://www.clipsyndicate.com/video/play/746694

If you are interested in any of these books or the strap wrap just email Abby at abrogan@thriverx.net.

Central Line Care Videos produced for Boston Children's Hospital starring Ellie.

Last winter we had a the pleasure of helping Boston Children's Hospital Home Parenteral Nutrition Team and the Dana-Farber Cancer Institute create a series of videos on Central Line Care.  Ellie and I had fun we honored to be a part of something that we hope will help others just like us.  

Oh how I wish we had these videos to watch when we were starting out.

To watch all the videos visit: childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos

Here is a sample of what we did:

Hand Washing:

Using Hand Sanitizer:

Scrubbing the Hub:

Connecting Tubing:

Changing the Dressing:

I heard from another parent that one or more of these videos are playing on the patient channel at Boston Children's all the time as well.

Ellie was in the Boston Globe again!

Make-A-Wish accepting frequent flyer miles

See the whole article at: http://www.bostonglobe.com/lifestyle/travel/2014/05/10/the-tip-make-wish-accepting-frequent-flyer-miles/U5yXAQGSafN1TgRBEvD8hM/story.html

Last fall after our trip we talked to Make A Wish about helping them in anyway we could. Ellie and I went to a basketball game at a local college to help raise awareness and said we would be willing to do more. They asked if they could use some pictures of Ellie for an internal newsletter and we sent them 5-6 photos from the trip saying they could use whatever they wanted if it helped others get a wish too.

 We never thought we would wake up to Ellie in the Globe again.

 If you have miles that you are not planning on using or can't use before they expire, please consider donating them! Once donated, the miles never expire. Participating airlines include Delta, US Airways, and United/Continental. More information at www.massri.wish.org/miles.

Sharing Your Story Can Be Such a Blessing to Someone Else!

I was searching the internet for something else tonight and found this.



It was heart warming to see, and I loved the message.  We hear from families still today that say our blog helped then when they needed it the most.  Even though we don't update nearly as much as we should we keep it up and running just so it can be there to help another family when they need it.  If you have a blog, Facebook page or group that you want to spread the word about just let us know!

A Very Wet Day

Thursday was a wet day, A very wet day. We were up very early to slog through Honolulu traffic to Hanauma Bay, a marine reserve that was set up to conserve and manage a very healthy and very accessible coral reef near Honolulu.  We were told to get there early to make sure that we had a space in the parking lot (Make A Wish made arrangements just in case it was jammed) and we were there for 9:45 AM, along with about a zillion GoPro-toting tourists that really didn't get the concept of don't stand up on the reef.

But fortunately, I had forgoten that Abby Brogan also moonlights as an underwater superhero and proceeded to escort/drag/carry Ellie past the hordes of googins and out into deeper clearer water where the novices didn't dare.  What they found there was nothing short of spectacular.  Turtles, live corals, and fish like Ellie and I had never seen before.

 

 

Ulua, or trevally, cruising the reef.



Ellie showing off the surface dives that she practiced in the pool all summer.

  

Abby the Underwater Superhero showing off on the bottom

One very cool urchin.

A school of convict tangs

One of the many poses that Abby used to escort Ellie around the reef.

 

 

  

All told Ellie and Abby were in the eater for almost three hours with one short break for Elecare and snack. Will, was happy as could be to patrol the shore wade in the warm water and throw pebbles.

Dry Day

Waterproofing Ellie has been very successful for us over the years:  Some Press n' Seal on the CVL cap and two sheets of Tegaderm over the whole site and she is good to go.  but one of the downsides of this is that more than one day of this makes  her skin raw and sore.  So we generally try to have a dry day after every wet day to let her skin recover.

For our first Hawaiian dry day we took off for the center of the island to the Dole Pineapple plantation, a spectacular tourist trap complete with a narrow gauge train, the World's largest maze (like a hedge/corn maze but with hibiscus)  and more pineapple desserts and concoctions than you could imagine.  The kids loved it and we had a blast and we were home early enough to have a rest before Ellie got to do one of the other things on her Wish:  A luau.

The Brogans, via the sea!

And yes, Ellie was on stage more than once.

But this was all a warmup for the coming wet day when Ellie finally got the chance to swim on a coral reef.

Two-fer

Charismatic- (karizˈmatik/)
Adjective. exercising a compelling charm that inspires devotion in others.

 Megafauna- (ˈmegəˌfônə/)

noun .  the large mammals of a particular region, habitat, or geological period.

Monday was a good day.   Especially for a girl with her heart set on seeing big ocean critters.

A spectacular dolphin experience in the morning:

Followed by a Do-It-Yourself turtle safari with Abby in the afternoon:

Yes, Monday was a good day.  

For Will as well: 

The unfiltered early returns

After a quick dry run in the pool this morning, Ellie, Abby and Erin took to the sea to see some fish.  

Here is Ellie's unfiltered words fresh out of the water:

A success.  

Abby had to drag her away from the fish.

What's your Wish?

And We're Off!

Yes, after months of planning and the requisite extra fun that comes with a girl with some extra considerations, we are finally off to fulfill Ellie's Make-A-Wish wish:  to swim with sea turtles and dolphins, see a volcano and go to a luau.  

Yes, if your deduction is up and running, we are off to Hawaii!  Tomorrow morning to be exact, and we couldn't be more excited.

We have known for a long time that Ellie would likely qualify for a wish and almost a year ago we started the process to apply.  As we expected she was quickly approved and then it was just a question of timing and the coming week is just perfect.

So at 5:30 tomorrow morning the magic limo arrives and we (Abby, Ellie, Will, myself and Ellie's nurse, Erin) are off to Oahu.  Ellie is armed with a sleeve of tegaderm to waterproof her CVL, a fresh snorkel to keep up her skills from the pool this summer and a new underwater camera.  She has learned her Hawaiian fish names and even used Humuhumunukunukapuaa as a special second grade spelling word this week.

We will be sure to take lots of pictures and are going to dust off this old blog to make updates along the way. 

It should be quite an adventure.  And if we get more than we bargained for, a doctor that used be with the Children's Short Bowel Program works in Honolulu.

Updates. Good news, Great news, Not-so great news and other things

I'm not sure if it is the the facebookification of the world, the onset of the Age of Will who is now 2 1/2 ,  Ellie hitting her stride as a school-aged kid, some other factor or a combination of a bunch of these but we have been seriously negligent in updating this blog for a significant amount on time.

So I will try to update all fronts here with the latest and greatest from Broganland.

Ellie:  Ellie is great. 

A happy soon-to-be seven year old, she goes to first grade every morning on the bus with her nurse/consigliere and loves first grade. Two different rounds of show-and-tell with her class have made her medical issues more of a fascination for her classmates than a problem.  She routinely gets supplemental IV hydration mid-day without missing a beat or a call home.  She just gets off the bus some days with a IV backpack. Abby and I just look at each other and thank the Commonwealth of Massachusetts for good nursing.

Ellie's school couldn't be more accommodating.  Everyone from the Principal to the nurse and her amazing teacher are great for us and do what it takes to keep Ellie going.  Even the food service people are bending over backward to include Ellie in school lunch by sending us their recipes and preparing special meals for Ellie so she can go through the lunchline.  Just like everyone else. 

We got great advice when we were moving-our town is truly where you want to be if you have a kid, especially a kid with some issues.

Some very cool news:  Because of her diagnosis, Ellie was approved this Spring for a wish from Make-A-Wish!  We have known for a while that it was  a possibility because of her central line and other factors so I sent an inquiry thinking that it would take a while to get things rolling. Boy was I wrong! Within a week, we had a full approval and a home visit scheduled and it looks like Ellie the fish/science geek wants to go to Hawaii to see sea turtles and volcanoes.  We are looking at timing and details but it should be sometime before next winter.

Some not-so-cool news:  Ellie has been off of TPN for more than two years now, but in the past six months her growth has stalled when it should be moving steadily upward.  We have tried a lot of tricks but we are heading in on Monday to restart TPN and give her the boost that she needs.  We will be at Children's for 3-5 days next week getting her restarted and watching for a side effect of restarting TPN called Refeeding Syndrome.  As we have experienced in the past, if the shit hits the fan, it is much better to be at Children's than at home. So we will go in on Monday, hunker down with all sorts of distractions and wait between frequent blood tests until it is time to go home.  This isn't a big mental setback for Abby and me.  Ellie hasn't made progress toward life without IV bags in a long time so our feeling is to get her what she needs and add some muscle and height.  Adding TPN adds another few minutes to our day and adds one pump to our arsenal but is not a significant change for us.

In Puder We Trust. One of our chief concerns in restarting TPN was what lipid Ellie would use.  The strict Omegaven protocol prohibits kids that have been off for more than a year from restarting Omegaven.  Which meant that we would be looking at Intralipid, as Ellie's lipid source- the same stuff that whacked her liver when she was an infant.  She is older now so the effects of Intralipid would likely not be as severe as a few years ago but there is that risk and her liver is already damaged so we were anxious.  Fortunately,  if there is one person who was more concerned about this than Abby and me, it was Dr. Puder at Children's who got Ellie on Omegaven back in 2006.  He went to work and within days of the nutrition team scheduling her admission, he had persuaded the FDA to give Ellie special approval to restart regular infusions of menhaden squeezings. 

She will not spend a single night on Intralipid. 

Ellie's compromised liver and her parents both did the same little dance that Carol the nurse did when we got the news that Ellie was approved in 2006. 

Omegaven Saves Lives.  

Will:  What to say about Will?  2 1/2 and everything you would imagine from a boy that age. Trucks, boats, cars, Richard Scarry and a vocabulary that is growing exponentially along with the length of his sentences. He is wonderful and oves his sister.  The other night Ellie's baby monitor stopped working in the middle of the nightand her pump alarmed when the battery died.  Will heard this and started yelling to us,"Mom.  Dad.  Ellie pump Beeeeeeping!  Ellie Pump Beeping." 

He is awesome.

We think that he will miss Ellie when we go to Children's next week.

Here's to hoping for an uneventful visit to 300 Longwood next week.