Mrs Wishy Washy

A little bedtime story:

OMG did I cut them off???

Her curls that is. About two weeks ago I decided that it was time to give Ellie's curls their first real trim. The curls were getting tangled all the time and they were getting stuck in the zipper of her backpack too, and that was not fun for any of us. So we gave her a sink bath, washed her hair and then I got started with the cutting. Now her hair doesn't get stuck in her backpack, is much easier to brush and wash and doesn't look as ratty. But the perfect ringlets are GONE!!! I always loved how her hair made perfect Shirley Temple curls that looked like I had spent hours perfecting, when in reality I did nothing. Oh well, hopefully they will come back in the humid weather this summer. Hopefully.

So back to a more serious topic, Ellie. She is still not gaining weight. She is basically stuck at 14 kilos. We think she has gotten taller and we know her shoe size is bigger, but the weight gain is not happening. We are also battling high output from her ostomy. Usually I can pin point the culprit when she has high output, (pork marinated in brown sugar and orange juice, Mac and cheese, too much Popsicle, beef with too much spice) but this time we are at a loss.

After her study she was pooping in her diaper 8-10 times a day . Sounds like normal short gut right? But we did the study because she wasn't pooping! Her ostomy output during this time was fantastic. It was around 300mls a day and her urine production was great too. Then she went back to her normal of pooping 2x a day but only with a suppository. And her output went up to 1000 a day. Not great.

We have been managing her hydration with extra D5 during her naps. Then we have been tracking everything she eats and looking for a reason. She also started oral vitamins right after her study, so we have been looking at those. Now we are mixing them into her milk bag at night so that she gets them over a slower period of time. But we are still seeing high output.

The next thing we are looking at is bacterial overgrowth. We haven't seen this since before her ostomy was created but, it is very common in the short gut world, so we knew it would come back. Her breath stinks and her output has taken on a almost yellow orange color, we think these might be due to bacterial overgrowth.

If we can get her output under control then I'm sure she will start gaining again. I'm ready for her cloths to look like they fit again.

Other than the high output and looking skinny she is doing great. She started gymnastics, ballet and Tap classes last week. Gymnastics are her wild time and she is amazing in ballet class.

We are spending today snowed in and very bummed that we didn't get to go to CT for K8's birthday party. But we did have fun playing in the 10 inches of snow that was supposed to be 1-3 inches. The sight of a snow angel with a enteral back pack impression in the middle is fantastic.

OMEGAVEN!! Welcome

With the article on the front page of the Globe last Friday we have a bunch of new readers. We went from having around 150-200 visits a day to over 900. So we decided to do an quick post to catch everyone up to date. I have linked key words in this post so if you don't know what something is, just click on it.

Ellie before the Omegaven

Ellie was born in with Jejunal Atresia, this left her with 30cm of grossly dilated small bowel coming down from her stomach that ended in a dead end, and then 70% of her colon, that was very small from disuse, coming up from below also ending in a dead end. What happened is that at about 10 weeks into gestation the bowel either got twisted or there was a blood clot, and the bowel lost blood supply and died. It was then reabsorbed into the body. We have been told by the geneticist at CHB that this was a just bad luck and not associated with any genetic disorder.

Ellie post Omegaven

She is was at Children's Hospital Boston for 8 months and now is doing very well. We have been back multiple times since then but not enough to get the name "frequent fliers." She was on Total Parental Nutrition (TPN) and Omegaven for IV nutrition through a central IV line in her chest for the first 32 months of her life. But as of December 1st, 2008 we were able to stop both with the hope that she would be able to sustain her needs from the small amount of bowl that she does have.
She eats 3 meals a day, and the only thing she drinks in Elecare formula. She also is on tube feeds 16 hours a day. This is what the is in the backpack that she wears. The backpack holds a pump and a bag of formula that is pumped into her belly 16 hours a day. Your intestine adapts as it has contact with food, so if it always has contact with food, then it is always adapting. And adaptation is the only way her bowel is going to be able to do the job that a normal child's would.
Ellie had very dilated small bowel that resulted in inability to tolerate food, bacterial overgrowth and a few line infections. So in November 2006 we opted to create an ostomy at the end of her small bowel to allow the back up of food to have a place to go, while keeping the colon attached. This has worked very well and we have seen little to no bacterial overgrowth since. And (knock on wood) no line infections. Click here to see a map of her bowel layout.
We are hoping that sometime this year we will be able to reconnect her bowels and remove the ostomy. Then she will have a central IV line for a short time and a G-tube for as long as she needs it.

If you are looking for information about short bowel syndrome or short gut, a very good site is the Short Gut Wiki, it was created by short gut parents and patients for anyone with short gut.

If you are looking for more info on Omegaven please look at the Short Bowel Wiki for more information. There are some great stories of some amazing kids on that site. Also you can contact Children's Hospital Boston to learn more about their Omegaven program. The lead surgeon for the program is Dr. Mark Puder he works along with pharmacist Kathy Gura to run the program.
We have met many amazing families through this blog. Please look at the column to the right to visit their blogs, get more info on short gut and our doctors. We also love to meet new short gut families, please feel free to email us (look in column to the right).


We can not say enough about Omegaven, or Dr. Puder, pharmacist Kathy Gura and Ellie's surgeon Dr. Russell Jennings. We give credit to all four for saving our daughter's life. She is an amazing child and we can't wait to see what she will do next.

Front Page!

Surprise, surprise, today's Globe has Ellie on the front page.

http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/

The front page:

The web video:





Thanks, Adam for putting this one in motion.

Maybe she is just getting longer

We are back from Maine and happy to be on home turf again. Traveling is much easier than it used to be but the home court advantage is always a good thing and not live out of a bag and a box of medical supplies.

It was great to see everyone and let Ellie play with her cousins, try skating on very big borrowed skates and go sledding again on a nice toddler sized hill.

See if you can spot the 'Oh, shit' moment in this video when I realized that I might have just flung my daughter into the woods....

'Daddy, do it again!'

We had a big relief Monday morning when we finally got home to the scale and had an Ellie weigh-in. Today she weighed in 14.18 kg (31.2 lbs) , more or less exactly what she was the day after Christmas and within a few grams of where she was when she went in for her study a few weeks ago and where she was when she came off TPN a little over a month ago. We were sure with the way that her pants were falling down around her ankles that she was shedding weight but apparently it is still there. Maybe just rearranged itself. Or maybe her body is following along with the growth of her feet and stretching out on a daily basis. But considering the current cold, the very active month that we have had and the other mysterious ills of her ut, holding her weight is a great thing.

So no call to Childrens to talk about getting on the TPN train again. The case of omegaven is in the cupboard but we'd rather leave it there if we can.

Speaking of which, we spent about 5 hours with folks from the Boston Globe Monday telling them the condensed version of the Ellie story and giving them a crash course on short gut, TPN and all things medical around here. It looks like they think the omegaven story is as great as we do and are working on a way to get it into the paper around here again.

we'll post a link if it runs.

Back to my favorite chair for some quality time while Ellie catches up on her sleep after four very busy weeks.

Skinny New Years

It has been a month off of TPN. I would love to say we are doing great and everything is pointing towards another month off, but I can't. Oh, what a month. If I had known what this month was going to be like, I would have thought twice about coming off of TPN.

So far we had 3 days of high output that settled down only to be followed by 3 days with no food (NPO) for her bowel study. Which was not fun, but hopefully we will get good results. We got home and were starting to recover from the study when we got hit with a 5 day stomach bug. Which also resulted 6 really fun hours in the ER, blood samples (everything looked good) and stool samples (She tested negative for all the big bad stomach bugs). That was a week and a half ago and she is still only able to handle a half Pedialyte and half elecare mix for her G-tube feeds. And to end the month with a bang, last night she just came down with a doozy of a head and chest cold. Good times, good times.

I am ashamed to say that this month I actually missed TPN. In the past when we had more than 2 weeks when she wasn't able to eat as much as she should, I didn't panic knowing that the TPN/Omegaven would pick up the slack. But that isn't the case any more. Now if she doesn't eat, can't eat or does not tolerate her food; she doesn't get what she needs and that meas weight loss.

We have gone from gaining a pound a month to losing a pound. She is skinny. The pants that were tight around her waist last month are now falling off. It is kinda heart breaking. I know that recovering from an invasive study, stomach bug and cold will take a while and that I should be patient and not jump to any conclusions about what this weight loss means. But it is hard to not get nervous when her clothes look like they are hanging on her.

The worst part is that I know that if this month had been a normal one, she would be doing great. So now we just wait for her to recover from this cold and then wait for her to start gaining weight again.

On the up side, she is looking great! She is charming everyone's socks off up here in Maine and up to her same old tricks. She is very chatty and loves to have long talks, and loves to play hide and seek. Her new favorite obsession is counting all 14 steps of the stair case going up and down each time. She is having a blast playing with her cousins and her grand parents.

Gib and I are looking forward to new year with the possibility of some weight gain, no TPN forever, a reconnection surgery, and Ellie starting pre-school. We wish you all a very happy New Years.

I leave you with a video of Ellie unwrapping her favorite Christmas present.

Happy New Years!!

Merry Christmas

The Official 2008 Ellie Brogan Christmas Card Photo

My goodness what a week we have had. It started with a Sunday trip to Children's for cultures and bloodwork (all negative so far), moved quickly into pre Christmas fun at home with a surpisingly chipper little girl.

The holiday adventure moved into phase II yesterdaywhen we headed up the road to Maine for the week to let Ellie and here four cousins in Freeport play for a while. This was the same plan that we had last year that was changed on the road when we heard of a mysterious stomach bug that was making the rounds so we are preparing to go with an understanding that we could be amending our itinerary at any time. Such is life with Gut Girl.

Not a whole lot of time to post much but here are some photos from the week leading up to Christmas. Things are good for now and we are eagerly anticipating the results from the manometry study.

Santa on a Firetruck. a tradition in our town since 1946. At least according to the sign on his sleigh.

Christmas Cookies.

A trampoline for a 2 year old? What could possibly go wrong?

Trampolines make good present opening platforms, too.

Let's play a game!


Mmmm. Ice cream. just a few licks.

Almost three days

That's how long we lasted this time.

we came home from Children's on Thursday afternoon and made it to Sunday lunch before we had to go back.

Ellie recovered from her study quite well and was raring to go on Friday and Saturday in the first real snow of the year.

We even broke open the gingerbread house and managed to decrate the whole thing without a battle over not eating the candy:


The one thing that we noticed is that the girl who took a suppository to poop before her study was now pooping freely after the study snaked three tubes into her bowels.

We chalked it up to good luck and figured that it would pass by Friday. It slowed a bit Friday but by Saturday we had 8 poops and by Sunday noon we had another 6. That borders on what the doctors call 'stooling out' and we gave a call down the road. Ellie was and is in great spirits (except for her poor bum) but that kind of activity set off alarms for all off us.

As luck would have it the surgeon on-call this weekend was none other that Ellie's surgeon, Dr. Jennings who asked us to come in to the ER for bloodwork (to check her electrolytes) and a couple of stool samples because as he put it rotavirus is every where at Children's these days. So off we went at 35 MPH down the Mass Pike through day three of a very long snowstorn that made me shovel four times....

By 5 we had clean bloodwork results, a sample of ostomy liquid was sent off for the tests and we were heading tothe car when Ellie told us: 'I am pooping, now'. So back they went to give a stool sample and we headed back down and even worse MassPike to get home.

It will take a day or two to get results and if it is rotavirus, we may have a significant change in our holiday plans in the works. We are hping to avoid a Children's Christmas.

Ellie is very excited about Santa.

But there isn't anyhting we can do about that one. we'll wait and see.

Back up and at 'em

At 5 PM tonight Ellie's adventure with manometry finally came to an end with a successfully completed full test and 10 hours of squiggles for the doctors to look at, analyze and interpret. We should have results in a week or two but the doctors very careful not to give us any preliminary results in such a technical test.

The reason is that the test produced a lot of these computer records (10 hours worth): Each line is a separate sensor in a manometry catheter. The top 5 or 6 are her stomach, the next 5-6 are her small bowel and the rest are her colon. Although these are lines are relatively flat, we watched as she finally pooped out the test solution late this afternoon and can tell you that the squiggles really dance when her bowels move.

Whether they are doing the right dance is the big question.

A little after 5 the doctor came in, removed the catheters from her colon, ostomy and g-tube hole, replaced the g-tube button with a fresh new mic-key button and we were done.

Ellie was ready for a walk around the floor:
By about 6:45 we had Ellie back in her bed and Abby was doing her best to keep Ellie from doing 'exercises' in her bed when I left:

Post Test, Wednesday 6:30 PM

She had Cheerios and elecare for dinner. We will come home tomorrow morning and spend the next day or so feeling our way along and trying get her back up to full meals as quickly as possible and hope that the little girl that we brought into pre-op yesterday is back in full force.

They sure look like the same kid:

Pre-Op, Tuesday, 1:00 PM

Getting better all the time

Things have settled down significantly since this morning and we are nearing the end of her 12-hour study.

Since lunch time Ellie has started to eat, shown good signs as food moves through her gut and has finally settled in for a nap.

Because of her vomiting it looks like she will need to stay another night just to make sure that things are working. We had anticipated this and Abby even packed for two nights.

We haven't heard results yet and probably won't for some time so we will wait to give the verdict until the pros give us the official opinion.

We have no idea when that will be.

So much for the smooth sailing

Well it isn't like we weren't warned about the down sides of a manometry study. And just to keep the reputation up, Ellie's gut has decided that it doesn't like having extra tubes in it and has started to vomit for us. IT started last night with some small spit ups and has progressed overnight to a full-on Exorcist/Stand By Me barf-o-rama by 9 this morning.





Abby is on her third set of borrowed scrubs. If we could only get Ellie to stop watching TV while she barfs we would be a lot better but I guess those Brogan genes are overpowering. Oooh, magic picture box......

This is very curious to us and to the GI/motility doctor but he las learned quickly that Ellie's gut is far from typical and had a few 'oh, really' moments this mrong when we told him new things about her history.

The thought right now is that the catheters that are in her bowels are blocking her bowels and things are backing up until she gets full and decides to unleash a wave of green bilious vomit on us. The color and barfing are eerily similar to the night she was born and all of those months where things were piling up in her dilated small bowel.

The doctor is concerned about this and may pull the plug on the test early if things don't get better soon. We hope that we can peel away tubes on by one to keep the colonic test, which is the real goal of this study for us.

More to come. This fancy wing of Children's has a laptop in each room so we can post from here. The hospital even updated their internet security to allow blogger to work. Finally.

Day 1 Update

All is well at Children's.

In fact, all is better than we thought going into the day.

Everything went as we expected and at about 5 this afternoon we were summoned into the recovery room by the GI specialist who is running Ellie's studies this week. He came to find us and tell us that she wanted her mom. Now.

So we went in to the recovery room and got her settled and learned the following things from the GI/bowel motility doctor in his words:

'She has most of her colon'. No kidding. the same kids who we assumed had only about 70% of her colon now has most of her colon. Considering that in some cases the colon can take on some of the function of her missing small bowel, this is great news and makes us even more optimistic about her gut adaptation.

'Her bowel looks good' Ah, words that we love to hear. Abby and I had tried to avoid thinking about what the doctor would see on the inside but hearing pink and good looking is always a good thing. That doesn't mean that it is working perfectly but on appearance it seems that there aren't any areas of dead or sick bowel in the length of her remaining small bowel.

'Some twists and turns at the top of her colon' Maybe the answer to the mystery of Ellie's lazy pooping. If there are kinks or turns or some other strange configuration of her colon up abouve, it might slow down the progression of stool through her colon.

All of these good words made our day but the proof will be tomorrow when the second half of her test gets under way. In addition to scoping her bowel the doctor left a bunch of new tubes in Ellie that will measure her bowel function tomorrow morning. Right now she has a catheter tube in the lower end of her colon, a catheter tube in her ostomy going up into her small bowel, a catheter going in her g-tube hole going through her stomach to her small bowel, a tube in her g-tube hole that works as a vent and a feeding port, and a central line. A helluva lot of tubes for little girl but she is still pretty dopey from the anesthesia so she has been pretty good about it so far.

Tomorrow's tests will take a long time and begin before breakfast for most people. I have to go to bed to get GUs fed and happy before going in for a 6AM start time.

We hope to have some new answers by this time tomorrow and who knows, maybe a plan for the next surgical step....

Let the games begin

This afternoon marked the beginning of a very long few days with a very different girl than the last time we had to take her in for bowel studies.

No matter how old she is, the doctors need a clear bowel to look around so we have to take steps to clean everything out before they go a lookin'. So at 1 this afternoon Ellie had a good lunch with Karlene. Noodles, asparagus and chunks of cold chicken breast. They had a picnic in our living room as a special treat with ellie doing gymnastics between courses.

I swear Ellie knew something was up because, by our estimate that is it for her until Wednesday afternoon. She is off of solid food, off of formula and onto pedialyte until tomorrow morning. Then it is nothing for a long while until this whole thing is over on Wednesday and we have to begin the task of getting her back on formula and food.

To add insult to injury we also had to give her an enema tonight and another in the morning to help clean things out. What is is that the wode-mouthed frog says? Ooooh.

Poor little girl.

We will see how she does tomorrow morning when she wakes up and will likely be hungry. We will try and distract her by doing fun things until 11 when we leave for the hospital but after a while she will want food and tell us, like she did tonight: 'I hungry. eat dinner.'

It is especially tough to deny her food when we have worked so hard to get her to eat over the past few years. I sincerely hope that this isn't an event than sets us back months on her feeding skills and drive.

Who knows we may take the plastic off of the candy cane by Christmas. All she wants is one lick. Really.

The bags of distraction are packed and we are ready to set up camp again at CHB. I wonder what they would think if we brought the dress-up clothes to make Ellie fancy:
If we can simply avoid Au Bon Pain. I hate that place and their lousy coffee. It tastes like hospital to me.

We will be laptop-less for this adventure so updates will come late tomorrow night when I get home.

Who knows, we may have lots of good news to show for the hard work.

Manometry

Next week we take the next step in the mystery of Ellie's Bowel when we head to Children's for a few days of tests. Ideally the tests will show us what the inside of her bowels look like, how well her gut adaptation is going physiologically, and also how well her bowels are working.

She will have two studies done over the course of two days. On Tuesday afternoon, after being food and formula-free since midnight (NPO/NPG as they call it) she will have a endoscopy of her bowels. Surprisingly, this simple look inside hasn't happened yet in her colon, we are hoping it will tell us some things about what is going on inside. She will be under general anesthesia for this and the plan is to scope her from the top down, from the bottom up and maybe from the middle, as well.

Then after the 'scope they will snake a tube from her stomach, all the way through her small and large bowel or maybe one from above and one from below. This setup will be left in over night and then first thing on Wednesday morning, Ellie will have an intestinal manometry study done. The tube that is in her intestines is connected to a small pump, which pushes water slowly through the tube and into intestine. As the intestine contracts and tightens around the tube, it stops water flow in the small holes in the tube. Each hole has a pressure sensor (manometer) attached to it and the whole thing is attached to a fancy computer so each contraction is recorded and measured and showing a pattern of activity. This study which takes eight hours of sitting in a bed attached to a fancy machine will show us how well the muscles in her bowel contract, whether the waves are coordinated, and also if the small and large bowels are in sync with one another or dancing to separate tunes.

All of these tests will hopefully answer the question of why Ellie still needs help to poop every day. If there is an obstruction or a 'pseudo-obstruction' that slows things down we could work to fix that. A lot of kids with multiple short bowel surgeries will develop scar tissue called adhesions that can constrict or kink the bowels.

The other thing that we hope to learn is whether things are coordinated enough to think about reconnecting her bowels and getting rid of her ostomy. Our concern is if we connect her small bowel to a large bowel that is blocked or partially blocked it will create a log jam and possible re-dilate her bowel, something that we have used an ostomy to fix for more than two years.

This week we are moving towards a total lockdown with Ellie since her much-anticipated intestinal studies are scheduled for next week and we had to delay this same study last spring because of a relatively simple GI bug. It would be really frustrating to get this close again and have to postpone it because of a cold or a stomach bug so we are keeping a tight hold on the reigns until next week. They do very few of these studies each week and a delay might mean another six months.

So no gymnastics this week, except in the living room.

The plan is to go in around lunchtime on Tuesday and be home for dinner on Wednesday but all things considered, we are planning for the possibility/likliehood of staying Wednesday night as well. Something about pumping a lot of water into her bowel sounds like it may be tough to bounce back from and an extra night at the Inn may be needed.

So we are collecting our DVD's for the 8 hour test to keep us all entertained and debating the old crib/cage versus a big girl hospital bed. Thankfully Ellie's taste in movies has evolved from the Wiggles and Barney to more watchable movies like Toy Story and Monsters, Inc. We will still bring Kipper along for the ride. Somehow his accent is an anesthetic for all of us.
It seems afte the pre-op appointment on Friday that the only thing to resolve how we are going to tear Ellie away from the Christmas tree and her collection of animatronic snowmen that came from her great grandmother:

So far, so good

Well today marks a week of the great Ellie Brogan TPN experiment. Since we have been told to look at the weekly trends in results rather than the day-to-day ups and downs that may swing depending on small things, here are the notes for the first week.

She is feeling great and doesn't seem to notice the difference between TPN and hydration fluid.
She still has lots of energy, is happy and, if anything is a bit hungrier in the morning than she was in the past but that may be our imagination. It is always great to hear her tell us that she is hungry.

She is keeping her weight up. This morning she weighed in at almost exactly where she was a week ago. That counts as a win in my book.

Fish oil is agreeing with her. We have started to give her liquid fish oil through her g-tube to replace those great omega-3's that she isn't getting from omegaven anaymore. The antiinflammatory properties along with the other great things that omega-3's have done for her are too good to pass up so we have done our homework and have a bottle of lemon-scented fish oil that replaces some of the oils that she was getting. I say some because I did the math (yes, I can still do stoichiometry from chemistry) and she would need a huge amount of liquid oil, about 30 ml or one ounce per day, to replace the dense good oils in her omegaven. We're not that brave and are pretty sure that she will dump that right out of her ostomy so we are giving her about half of that and will add it as we go.

We won't know if she is missing the other parts of TPN like vitamins and proteins for a while and will have those checked next week when we go in for her stay at Childrens for her tests.

It will be like clinic. With a bed.

So we keep on moving, eating and watching Ellie do her tricks.

Ellie is really enjoying Christmas and thinks that our tree and some well-timed snow is the greatest thing in the world. Even though we only got 1/2 an inch yesterday, we made a snowman (all 8 inches of it) and threw snowballs. The tree is up, the animatronic snowmen are singing and it is off to the races.

Last dance with Omegaven...

Abby drew the short straw last night and got the honors to put together the last go round of full-fledged TPN tonight. I serandaded her with my version of Donna Summer's 'Last Dance'.

Yup. No more splitters, no more caps each night....

we have gone from this with every other night's set up:

To this:Instead of an ingredient list that reads like a twinkie wrapper (I still don't know what all of the components are) we now get a very simple list of things that are going into her central line: water, salt, sugar. And we are down to just two backpacks instead of the Omegaven set-up that required special handling to keep the glass bottle upright.

Bye bye Omegaven. Thanks for all of the good that you do. Maybe we'll see you again sometime. Hopefully not. Go on and save some other kid's life.

Day one of the no TPN experiment starts tonight. Results to follow.

Delivery Day

Today marked an unusual milestone for us which might not mean all that much to those folks who don't live by the timing of their weekly infusion delivery. Today we got the (hopefully) last weekly shipment of TPN.

Usually we get two big cardboard boxes delivered each Tuesday morning by our friendly UPS man. On good weeks the delivery comes ahead of the garbage man so we can recycle the boxes that day. In these boxes are all of the things that we need to do Ellie's TPN for the week and a few extras in case we get fat thumbs while setting up her infusion and contaminate an extra set of tubes. Eight bags of fluids (one for each night plus an extra), tubing for TPN and omegaven for the week, syringes etc. All told there are about 150 items in each shipment that need to be opened, checked and stored to make sure that we have what we need. It all goes into one min fridge and big cabinet that Karlene keeps neat and orderly for us which makes the evening set-up much easier:

This made me think of the change that is about to happen as we experiment with life after TPN and how much easier this will be after December 1 and also how much easier it will be to travel with Ellie without TPN.

To give you an idea of what it takes to go on the road, here is the list of things that we need to bring for just an overnight, 80 different items by my count and close to 250 individual items to bring (but I could be missing something). All of the bold things won't be necessary when the TPN turns into hydration.

Zevex Infinity formula Pump and backpack
Charger for Pump
Elecare (1 can for every two days)
Mixing bottles (x3)
Sippy Cups
Zevex Bags (a new bag for each day)
Mic-Key extensions (that connect her pump tube to her g-tube button)
Safety Pins (to pine her tubes to her clothes to keep them from pulling)
Silk Tape (the duct tape of the short gut world)
60 ml syringes for flushing Mic-Key extensions
Small oral syringes for meds
Replacement G-tube kit
Clean Dressings for her g-tube
Bacitracin Ointment (bacteria)
Steroid Cream (swellling)
Nystatin Antifungal cream (fungus)
Q-tips
Lubricant (for reinserting an old g-tube or inserting a new one)
Ostomy bags( 1 for each day)
Ostomy bases(1 for each day)
Ostomy wipes
Cotton balls (lots and lots to absorb the fluid from her ostomy)
Rice Bag for warming ostomy bases and making them pliable
Stoma Powder
No-sting barrier wipes
15-20 wash clothes for bag changes
Curved scissors for cutting holes in ostomy bases
Emesis basins
TPN Pump (CADD Prism)
TPN backpack
TPN bags ( one for each night plus and extra in case*)
Infusion vitamins

10 cc syringes to add vitamins to TPN
IV Zantac
3 cc syringes to add Zantac to IV bag
Portable sharps container
D10 bags
9-volt batteries
Rechargeable battery pack
Omegaven Pump (Curlin)

Omegaven Backpack

Omegaven Pole clamp

Bottles of Omegaven (one for each night plus an extra in case*)

Portable IV Pole

C-cell batteries
TPN Tubing
Omegaven Tubing

Vented Spike adapters (the IV bottle won’t drain unless it is vented. Almost learned this the hard way)

Omegaven Hangers

Y-extension sets (to let two fluids go into one central line)
Positive Pressure Caps
Line covers
Saline Flushes
Heparin Flushes
Alcohol wipes
Hydration Fluid Bags
Hydration tubing
Hydration Pump (CADD Prism)
Central line dressing kits, 2 per week, 1 for scheduled changes and 1 unplanned.
Sorba View dressings for her central line site
Sterile gloves in medium and large
4x4 Tegaderm sheets
Sterile Gauze
IV Clamps
Absorbent Chux Pads ( contraband hospital pee pads)
Replacement bed linens (sometimes even an overnight doesn’t do the trick)
Tylenol
Thermometer
Scissors
Tweezers
Sterile water
Diapers
Overnight diaper for night time (a regular diaper just won’t hold a pound of fluid like an overnight will)
Diaper wipes
Diaper scale (travel version, the hospital grade version stays home)
Glycerin Suppositories
Cutting Board for the clean space for TPN set up
Sanitizing Wipes
“Green Book” (our lime green binder of all of Ellie's daily logs, monthly summaries, lab reports, etc)
Medical history USB Drive
Baby Monitor

YEah, that's about it, I guess. Amazingly we can pack for a week away in about 45 minutes if we need to and somehow manage to get all of this stuff into a car that is smaller than a moving van. In fact since the Pack n’ Play went away a few months ago, we even have extra room in our normal sized car. But we pack knowing that even a little thing from this list will either cause us real problems or even make us come home prematurely. If the tubes don't work, the food doesn't flow and so on. we double and triple check everything...

A good thing is that coming home is always easier than going since most of these things are used and tossed when we are away. But don’t get me started on the amount of waste we make, at least we don’t need a separate garbage bin like some other short bowel families.

Next week's shipment of boxes will be an odd thing for us. Let's hope that the changes go over well with the only person in the room who doesn't really know what is in them. She prefers to hide in the boxes and make snowmen from the styrofoam that insulates the fluids.

Hokey Pokey Ellie

The skirt just keeps on playing that silly silly song!



We think that Ellie might just have it to be Miss America, 2025. But there is no time like the present to get her into training.

Her talent: Dance of course!

Oh and in case you have forgotten, Only 3 more nights of TPN!

NO MORE TPN!!!!

Well, in the the immortal words of the late great Jerry Reed, it looks like 'We're gonna do what they say can't be done....'

Yes, as of December 1st 2008, Ellie Brogan is going be OFF OF TPN!!!

(It is okay at this point to stop reading, stand up, and do a little happy No TPN dance. It's like the poop dance, just better.)

Ellie had her first clinic appointment in two months yesterday at Children's. Even though we were anxious about her weight, after a round of nasty colds and mystery ostomy dumps over the last few weeks, she still managed to gain 500 grams (about 1.1 pounds) and grew an inch and half.

'Good growing, kid.'

So after a the usual round of unconventional horse trading, bargaining and negotiation with the doctors pushing to be aggressive and me pushing to be conservative, we worked it out that as of December 1, our weekly shipment of TPN would no longer include TPN and that she would move on to seven nights a week of D10, (10% dextrose solution) to keep her hydrated and give her a tiny amount of sugar. I insisted that we start this after next week's holiday. I just didn't want to run the risk of anything going wrong and then spending the holiday weekend at "The Inn" with a skeleton crew of doctors and nurses piecing things together. No thank you!

This is huge news for a kid with a high ostomy and a small personal victory for us. The doctors that were pushing for these big changes yesterday were the same doctors that we fought with in 2006 because they disagreed on the use of an ostomy to resolve Ellie dilated bowel. They firmly believed that this approach could not work, that she would have constant issues with hydration, mineral balance and skin breakdown. They essentially told us that she wouldn't grow or thrive with an ostomy. And would never come off of TPN.

Have you seen our girl lately?

All of this is nerve wracking for Gib and me. We have seen lots of kids go off TPN and then need it again and had their parents be crushed by this step backwards. We are going into this as another experiment with Ellie. We know that it may not work and she may lose weight and need TPN again. We are cool with that. Really.

We won't be devastated if she needs TPN again. It really won't change our daily routine all that much- we are just down to one IV pump a night instead of the two that we have on TPN nights now. This is all easy to say right now but we'll see we feel if it happens. We also know that when we do reconnect her bowels, she will probably need to go back on TPN while her intestines learn to work together.

Ellie playing with cellebratory ballons from Aunt Kate

One thing happened yesterday as we were leaving clinic that really helped this whole thing sink in. Usual clinic appointments include a visit from Kathy Gura, the pharmacist and Omegaven guru, she will check in on our girl and drop off a large bag full of omegaven for the month ahead. Yesterday she dropped it off as usual and then after the changes to Ellie's TPN were decided, a nurse came back in and grabbed the bag of omegaven saying, "you won't be needing this, I guess."

We are going to have one of our clinical calls with our nutrition team at NutriThrive next week to talk about vitamins, minerals, fats and all the fun stuff that we have to worry about now that she is off of TPN. And now we also need to start looking into fish oil suppliments, because no more TPN also means no more white gold, Omegaven.

All in all we are very excited, and can't believe this is finally happening. But, to keep ourselves grounded we would like to invite you all in embrace a phrase with us:

"She is off of TPN, for now."

YAHOO!!!!!!

What do you say..

A friend sent me this email and I thought I would reply on the blog since we have heard the same question from many, many other parents.

Hi,

I am having a difficult time explaining about my son to people that I don't know. How do you explain when Ellie isn't doing things at the right times, meeting milestones and the obvious stuff like the backpack? I feel like I just don't know what to say to people that I may see again or people that I will never see again. It would be great to have a one liner that explained everything and I know I should have try to keep a positive spin on what I say, but I just don't know what to say. I wondered if you've encountered anything along these lines and might have any suggestions. It's probably a person decision from parent to parent based on their comfort level and such.

Yes, we did and do run into this almost everyday when People see Ellie's backpack. They say, "oh how cute! What do you have in your backpack little girl?" I have always wanted to reply, "Elemental formula, a pump and some scary tubes."

But no, most of the time I smile and explain that actually it contains a feeding pump. And then I explain, with a smile on my face, that she was born missing some of her small intestines. (ok so it was closer to 90%, but people seem to handle "some" better) I also explain that she will need this pump for the next few years and eventually grow out of it. (we hope this is the case, I guess that would be the positive spin you mentioned.)

Some people react really well and seem genuinely interested and will ask good questions. Others end the conversation kinda quickly and move on. I have tried, and am still trying, to learn to not care about the people that get scared. Mostly I try to center the conversation on how well she is doing considering everything she has going on. It does seem that my positive attitude about the whole thing does rub off on people.

I am still surprised by the number of people that when I start explaining what the backpack is, even to complete strangers, how many of those people know other kids and adults that have been on feeding tubes or know some one with an ostomy. The most surprising thing is how many people have been on TPN, on feeds or have an ostomy themselves. This is a whole world that no one talks about until you are living it, but it still shocks me how many people there are out there that have been through some part of what Ellie is going through. The backpack has also been our ticket to the secret club, people see it and know what it is and will chase us down to talk about the pump or commiserate as to what we have to go through. This still throws me off.

Now, that all being said... I do have to admit that sometimes I just hope and pray that I can get in and out of places without people noticing her tubes. And sometimes when people ask what is in the backpack I just smile and say "toys" and keep walking. I don't always have the energy to be upbeat and happy about all of Ellie's stuff. I usually also never mention the Central IV line or the ostomy to strangers that ask about the backpack, I think that would just be too much.

But I do take a completely different approach when we go somewhere where we will be going many times, like play groups or classes. If I get there early I will introduce my self to each parent and then somewhat quickly segue to explaining all Ellie's stuff. If I get there later and there are a bunch of people there already, I pick Ellie up and introduce her and her backpack and everything to the parents.(might as well shock them all at once) I do this because I want everything to be out in the open, so people will not feel like it is the elephant standing in the corner that they can't talk about. Also, because I want people to know her and once they get to know her, they see past the backpack and the bulge in her shirt from the ostomy.

I also don't want these parents to be afraid of Ellie, afraid of their kids hurting Ellie while playing with her, or have any fear pass on to their kids so that they are afraid playing with her. She is pretty tough, she plays just like any other kid and we secure her tubes so that even if they get tugged everything will be ok. I know she is different, but I want to keep that from her for as long as possible. After a few visits people don't react when her pump beeps or think that it is weird that I need to move to a private room when I empty her ostomy bag. (I still think the contents of her ostomy bag might be too much for outsiders)

Meal times and swimming are still the times when she sticks out as different, but hopefully that will get better with time.

As far as having one sentence that explains it all, good luck, let me know when you figure that out. I will say that it has helped a ton to have this blog. I can just tell people to read the blog and then they catch up on their own and I also don't have to field many questions like....."Oh you must go to the beach a ton, having it right down the street!!" (it is a beach on a lake, and Ellie can not swim in freshwater, not until she looses all extra holes, including the G-tube, so it may be years)

Actually that is one of the main reasons we started the blog, we just couldn't handle telling her story over and over and over and over..... It has also given me a place to vent and to learn to accept everything that is happening with Ellie. Strange as it sounds, it is true.

Ellie taking her dad on a BOAT RIDE!!