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.

Ugh.

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.

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. :)

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.

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.

Homeowners claim: Pump vs. Window

So Gib left today for a fishing tip with his dad and brother. They do this every year, and I love that they do it. I honestly think Gib needs to spend more time fishing. I may regret that statement soon, but oh well.

I discovered tonight that even though it has only been a week or so since Gib was gone last, I am out of practice. I didn't get Ellie down for a nap until 2:30, and then didn't get her hooked up until almost 8:30 tonight. That means she will still be hooked up at 8:30 tomorrow and then she also decided to finally fall asleep about 15 min ago. Yes, that would be 10pm.

It was a combination of me being slow, Ellie not having an appetite because she is getting a cold, the sun finally coming out for the first time in two days at 6pm (we just had to go puddle jumping), a pump malfunction and Ellie wanting to talk to daddy on the phone. I have to say that other than really, really, really wanting to chuck an Omegaven pump through the window it was a good night. All I have to say is thank God for back up pumps.

Ellie is doing well. We are on only 4 nights of 500mls of TPN and 3 of D5. It is a huge change from the 1500 we were on before. The bags are so small. It feels weird giving her so little and I feel like there is no way that can be enough. I also feel like I am starring at her all day just waiting for the sign of dehydration. But so far so good. She is getting a cold so we will see how long this lasts.

Bottom line. We are good, busy, frazzled but good.

Way to go Omaha!!!!!

Nebraska Medical Center is one of the bigger short bowel centers in the country. And they have started an Omegaven trial. YAHOOOOO.

Here is a quote from the article:

"The Nebraska Medical Center recently began giving it to two children and intends to give it to Braxton and others soon to study its effectiveness. Dr. David Mercer, a transplant surgeon at the hospital, expects to enroll more than 100 children in the study over the next two to five years."

Read the whole story here

http://omaha.com/article/20090611/LIVING/306119953

On the home front, no news is good news Ellie is doing really well. We have cut her night time hydration down by 2/3 and she is starting to eat more and more solid foods. We are relearning what she can tolerate but she is doing well. More later...

HOME!!!

Need we say more?

Cross your fingers, Cross your toes

We have been told that today is the day. So knock on wood, cross your fingers, see a penny pick it up, do all that good luck stuff and hopefully we will be heading toward the door soon.

The view from Ellie's bed

Sorry about the last post, it was supposed to be video of Ellie riding a big wheel all around our floor. But try as we might we can't get it to load as anything other than a picture. Oh well, trust me it was good to see.

I was joking with one of the nurses that they should pay us to come in once a week and have Ellie ride her bike down the hall or race the big wheels around, just to show all the new parents how normal (sorry Gib, Typical) she is.

So now we start the wait. The discharge wait. We are very used to the fact that when they tell you that you will be discharged today, even though it doesn't seem like there is that much to do, it will take all day. If we are out by 2pm we will be doing really well.

This is Ellie's bed here at the hospital. She is very into the Fancy Nancy books and wanted her room here to be "fancy." She got a lot of help with balloons from her Aunt Beth, and her boyfriends Max and Christian. We also got to see some friends while we were here, Chase is here getting rid of a line infection and so we were lucky enough to be able to spend some time with him and his folks.

Well we're off for a few laps around the floor while Ellie and I wait for Gib to get here and for everything to fall in to place for us to get OUT A HERE!