Sunday, November 30, 2008

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.

Tuesday, November 25, 2008

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)
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)
Sterile water
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.

Sunday, November 23, 2008

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!

Friday, November 21, 2008


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."


Thursday, November 06, 2008

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.


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!!

Monday, November 03, 2008

Don't Forget to VOTE!!




Saturday, November 01, 2008

Happy Halloween!!

Ellie was very clear this year abut what she wanted to be for Halloween- 'Stellaluna, the fruit bat!' from the great kids book. Incidently this book was a gift from our friend Kelly that used to take care of the bats at Mystic Aquarium. Ellie made her choice of costume when we first discussed Halloween in September and never changed. Abby got to work making a costume and this week we had her debut at the firehouse party, followed by a second act at the town hall with every other 2,3,4,and 5-year old in town:
and the the a final go 'round as a fruit bat last night.

What can I say, our town really likes Halloween and fortunately Ellie's costume was very easy to put on and wear without lots of trouble.

Ellie still doesn't like sweet things except for lollipops so trick or treating was easy for us and we didn't have much of a fight about not eating the candy. She liked ringing doorbells more than the candy. We are pretty sure that this was our last year of distracting her from the mountains of candy that are out there so we will have to work on some strategy for next year to keep her pumpkin empty or filled with things that are good for her and her bowel:A slug of candy could throw her bowel for a loop for a good long while, something that isn't quite worth the trouble. sounds easy but try convincing a 3-year old about this......

Taking her out to walk at night was a new thing for us as well and she did remarkably well with all of the things that were going on around her.

The closest thing we had to a meltdown came after we got home and tried to piece our evening routine together a few hours late.