Tuesday, July 14, 2009


We are home!! Discharged this afternoon. Ellie is doing well, still not 100% but better. We will be on rocky ground over the next few days but we will be home.

Sunday, July 12, 2009

Back to her old tricks

I finally went home last night and Gib stayed with Ellie. I was greeted when I got off the elevator by the old Ellie. The squealing, laughing, running, singing and giggling Ellie. It was great.

Ellie and her best funny faces

She does not have a line infection. Gib lost the bet. When we were admitted I thought it was a GI bug and Gib thought it was a line infection. So now Gib has to scoop the dog poop out of the back yard for a month. He he he he he
All the stool cultures have come back negative so far, but there are still a few tests that are pending. So we are still on contact precautions which means no playroom.

So, no scary line infection, no scary norovirus. Gib is not allowed to do diagnoses any more. He has such a flair for the dramatic that he tends to lean toward the scarier diagnoses. But in reallity it looks like a simple GI bug and some bacterial overgrowth.

She woke up this morning had some eggs, bacon and some Elecare. Then for lunch she ate some noodles, chicken and Elecare. We did take the oportunity of being here to try vanilla flavored Elecare. It was not a hit. Ellie still prefers her Elecare plain and unflavored.

So we are preping for going home tomorrow and keeping our fingers crossed that she keeps doing well.

Friday, July 10, 2009

A kiss from Sleeping Beauty

Here is a video that finally uploaded to YouTube for us of Ellie at her happiest last weekend:

Pure bliss. Watch it over and over again for maximum fun.

This video does a great job cheering up the girl while we wait for results.

Speaking of which, so far there are no positive cultures from her blood and the GI doc now is thinking norovirus or rotovirus which seem to make a lot of sense considering the symptoms:
  1. Nausea.
  2. Vomiting.
  3. Diarrhea, and
  4. Abdominal pain;
  5. Loss of taste.
  6. General lethargy,
  7. Weakness,
  8. Muscle aches,
  9. Headache,
  10. Low-grade Fever
As far as we can tell she is batting .900 with these symptoms. Everything but a fever.

No wonder she tells us that her food tastes bad.


A quick bonk

For a long while after Ellie came home in December of 2006 we kept the 'go bag' all packed a ready for an unplanned trip to the hospital in case of a line issue, a sick girl or a range of other issues that could send us east bound to Children's.

After a few years of smooth sailing, we let the bag go, took out Abby's PJs and toothbrush and ultimately put the whole bag in the closet.

This afternoon we had to 'ring the alarm' for the first time in long time and for a about ten sweaty minutes I cursed every item that ever left that bag.

It all happened like this. Which may seem dull from a distance but was definite not so for us.

first off, Ellie has been barfing for us every now and then for about two weeks. Usually first thing in the morning but also during the day she will give us a funny look or ask for us to 'vent her button' (attaching a tube to her G-tube button and letting out gas or excess liquid to relieve the pressure) which is usually followed by a significant barf.

Yesterday Ellie had an especially large and explosive barf while I was off educating celebrities and she ended up at Children's for a barium study to check for kinks, obstructions and other problems with her newly attached bowel. All signs were good and the doctors even noted that her bowel looked better than it did pre-op in May.

This was good news but to get that news it involved putting a lot of barium chalk into her fickle gut, barium that could turn into constipation or other probelsm if it was left in there. A series of enemas (ouch), and suppositories cleaned her bowel out pretty nicely but left her a bit dry by lunch today so we hooked her up for a naptime round of hydration to help her catch up.

She napped until 4:20 and came off the IV around 4:30.

Taking her off the IV is a standard routine: Stop the pump, unhook the threaded conenction, wipe with alcohol, attach a saline flush and push in 10ml of saline, detach, wipe again, attach a heparin syringe and add 5ml of heparin to lock the line and prevent clots.

around 4:45 we noticed that Ellie wasn't quite awake or perky like most days and was, in fact, prone on the couch, moving toward sleep. She was also quite sweaty on an otherwise cool day.

We tried perking her up but she told us that she felt bad, wanted to barf, and wanted to go back to sleep.

Something was wrong with the happy Ellie.

It took us about 5 minutes to realize this and make a call to her surgeon to tell him that we were coming.

[Insert frantic scrambling and packing here]

Along the way to Children's for good measure Ellie barfed for distance and by a little past six we were in the ER expalining Ellie to the residents who had been on the job a total of 8 days.

Part of the diagnosis was drawing blood cultures from her central line- a very similar wipe/flush/wipe/f;ush operation. Curiously, we saw a similar result in a sweaty Ellie who became very tired and lethargic after the flushes.

Aha! we said to ourselves, we've read about this: Bugs living in the central line tube get dislodged when the flush happens, spreading bugs into the bloodstream and causing a reaction, a fever and lethargy.

So with that intel and self diagnosis but Abby and I, the docs admitted her and discontinued the use of her central line until we know what the cultures say. They may also say absolutely nothing and then we go looking for a different cause but for now, considering the significant risks of central line infections and general sepsis, we treat that.

The vancomycin starts tonight through her fancy new IV line in her hand and Ellie is comfortable in the very same bed we left at the beginning of June. She woke up in the tranfer from the ER just enough to see the room and tell us 'Oh good, the big room with the fluffy bed!'

She isn't acting sick but is very tired, groggy and generally not the girl we know.

We are crossing our fingers that we caught whatever it is in time to keep the line working.

From the action of Disney to the stagnant waiting of the ER in one short week.

Never a dull moment

By the way, to the scumbag who stole our towel from the top of our car in the Children's parking lot tonight while we were inside: I hope you enjoyed the copious load of Ellie barf that was wrapped in that towel.

Tuesday, July 07, 2009

Gib in the News

As many of you know Gib works for a ocean conservation organization called Oceana. Today he spent the day with the new member of their Board of Directors, Sam Waterston. You might remember Sam from that little show, Law and Order. Sam has a strong interest in the waters and the fish that live off the coast of New England and that is Gib's specialty.

Tomorrow Sam is being interviewed by the CBS Morning show and Gib will be there as well. Now all you may see is the back of Gib's head but keep an eye out and you might get lucky. I think they will interview Gib as well, but Gib does not agree. He also doesn't know if it will be on tomorrow or the next day but hey if you are near a TV tomorrow morning or Thursday morning, take a peak and see if you can gave a Gib sighting.

Oh yeah, Ellie is fantastic as usual. :)

Sunday, July 05, 2009

We're Back!

We managed some beach time and a great trip to the Magic Kingdom. Gus had a very exciting time while we were gone, but more on that later.

Thanks to the good folks at JetBlue we got in to Boston early last night and got home around 10 last night. A very successful first adventure in the world of air travel. We have new respect for the good folks who fly with their kids to get Omegaven.

On the last day of Oley the weather cleared up a bit and so we put on our suits and raced out to the beach to get our girl some good beach time.

The waves were pretty big but she loved it. Much better than last year when she ran screaming from the waves.

Ellie practicing her Karate kid moves

Ellie discovering the little clams that live in the sand.

Day at the beach down now time for Disney!!!

Disney was fantastic if a bit overwhelming for a three year old in 92 degree heat with about a million people on hand to see fireworks.
Disney has a special program for people with disabilities that isn't on their website. Another mom at the Oley conference told us about this and it made the difference for our trip. This program let us identify Ellie's risk of dehydration and gave us a special 'Red Card' that allowed us to skip lines in the heat and get Ellie on rides ASAP. Right up the wheelchair ramp, past a sea of scowling moms and dads and onto the ride.

If anyone griped out loud we joked that we were ready to ask Ellie: 'Ellie lift up your shirt for the nice man.' we met other families with a rage of issues and they all said that this program was the difference between going to Disney and staying home. Email us if you want more details.

On the Dumbo ride
Cinderella, Belle and Sleeping Beauty all need gold stars for the day on Friday. Around lunchtime on Friday we went ot the Princess Hall of Fame to accomplish our only goal for the trip to Disney: Ellie meeting her favorite princesses. Now I know that it is their job to be bubbly and nice but these three really went above and beyond for our girl.
I am convinced that I could see the moment that Cinderella saw Ellie's central line dressing and catheter and from then on she turned it on even more. Wonderful, simply wonderful.

How do I get a letter of thanks to them without sounding like a stalker? Dear Cinderella, Belle and Princes Aurora....

On our way back to the hotel for nap time, ended up that this was the only nap she got as she would not stop talking about the princesses.

Last ride of the night, Dumbo was one of her favorites

This is Cinderella's castle right before the fire works when off.

We also learned that Disney has the best fireworks, even if you only see them as you run a petrified little girl out of the park and watch the finale from the monorail.

Other things we learned:
  • Parents need to check their plans at the door when doing Disney with a three year old on TPN. we had lofty plans to do two parks in two days and then fly out at the end of the day on the second day. This would have worked just fine if Ellie wasn't three and her TPN didn't need to stay cold and.... we changed plans, skipped the second day and had a great day yesterday instead.
  • Jet Blue is fantastic. The TVs are just the beginning. Turns out they check extra bags with medical equipment for free. we like free.
  • For all of the criticism that they get, there are some excellent TSA agents out there. We called ahead to the airport the day before our flight and at 5 AM on Monday we were met by a very professional supervisor at Logan in Boston.He asked some simple questions about Ellie and escorted us and a carry-on that was full liquids, gels, aerosols, scissors, needles and pumps that can't go through an x-ray through security.
We are all exhausted but happy and healthy (although the timer on the central line infection won't give us the all clear for another 72 hours).

Gus had a special adventure while we were gone. we are still sorting out the details but it involves bolting from a dog sitter, finding his way a mile through the woods, getting picked up by a stranger 12 hours later, transferred to our neighbor, spending a night across the street and finally coming home late last night. He is as tired as we are but we are all home. Anyone know a good dog sitter in MA?

Gotta go and feed the girl. Eating has been an adventure this week to say the least but Ellie has done well enough and maintained her weight. Restaurants are fun but distracting. What we need now is a few weeks at home.

Ah, home.

Wednesday, July 01, 2009

Washed away at Oley

Greetings from the washed out Oley conference in soggy St. Petersburg, FL.

Our first sir travel experience was flawless and the research that Abby did doe a work proved to be spot on for air travel with TPN. A good TSA guy is rare but worth their weight in gold expeciallt at 5AM.

JetBlue. Cable is magic.

The story of the week is rain. Lots of it. Like near record, Led Zeppelin 'When the Levee Breaks' rainfall days- today Tampa got close to 5 inches of rain just today.

Sandbags? Those don't look like FEMA bags..

Glad we remembered the raincoats on the way out the door. Really glad that we brought sunscreen from home instead of forking over all that $$ for stuff we won't really use. We have still managed to get outsode every now and then but it has been pretty soggy:

Oley has been a good trip. Abby is here for work with NutriThrive and is officially a member of this year's Oley faculty since she gave a talk about how to navigate through a short bowel clinic appointment.

Since Ellie had no interest in the Oley daycare, it has been a Gib and Ellie travelling circus for two days. Which has been great since Ellie is the best partner in crime short of her Mom. We have been everywhere together this week and she has been just wonderful.

I even took her to the hotel bar tonight to get my first beer of the trip tonight . I stopped short of letting her order for me but was really tempted to let her ask "Sam Summer, Pwease!" Ah, good old family values.

Even without seeing a lot of talks we had a great time seeing families of kids with short bowel and other digestive issues including afew that we had corresponded with for a long time before meeting this week. Seeing Ellie run around with 2-3 other kids with backpacks was good to see and in the future it will be good for her to know other kids with similar equipment even if their diagnoses are much different.

We hope the weather gets better tomorrow. We are taking the plunge and bringing Ellie to see Cinderella at Disney until Saturday when we fly home. Seeing all of these kids made us realize that despite her progress things are still quite uncertain for Ellie and we need to seize this opportunity.

Besides, think of the look on her face when she sees her cast of princesses? we'll be sure to take lots of pictures.