Thursday, December 24, 2009

All I want for Christmas is....


Yes, the Bacterial Overgrowth is back. Lots of gas from both ends, smellly poops and not appetite-all classic signs that the bugs are growing in places where they shouldn't which causes gas, malabsorption and other troubles. Fortunately we got our holiday shopping done early this morning and had the prescription filled by lunch.

We don't like the thought of needing to cycle the antibiotics but with her current plumbing and lack of the control valve to keep the bugs in the proper place, we are coming to realize that rotating drugs is probably in order for a while.

We are all very excited for Christmas and will try and post pictures of Ellie's extravaganza tomorrow.

In the meantime, here is her Christmas card picture for this year:

Merry Christmas.
And, as Ellie will tell you, Happy Hanukkah and Kwanzaa.

Sunday, December 20, 2009


Our town has a wonderful tradition before Christmas where Santa rides around town on a fire truck making stops in various neighborhoods over the course of three nights. They have been doing it for 45 years now and this is our second year maing the trip to se ehim as he makes his tour.

Christmas is a very bug deal in our house right now along with Chanukah and Kwanzaa since Ellie is an equal opportunity holiday celebrator. So we made sure to track his trip tonight and even went so far as writing a letter to the big man which she delivered when she was brave enough to sit on his knee.

Uh, Mom.... Are you sure this is okay?

Here's my letter.
A very serious conversation. Santa took lots of time to hear all of the details.

I'm still sure about this whole thing.

And away he goes.....

Sunday, December 06, 2009

Do you sthmell it?

In the past few weeks Ellie's bowels have started to act funny, make a lot of gas, and around Thanksgiving, her appetite went to zero which is a generally bad sign. She has been quite happy as usual but told us very clearly that she 'didn't feel like eating today'.

We spoke to Childrens’ early last week and the two sides of her team, surgical and medical, with a healthy amount of input from Abby and I, suggested two parallel approaches to treat her new symptoms: a round of antibiotics to treat possible overgrowth in her small bowel and a contrast study of her bowel to rule out any anatomical problems like a stricture, narrowing, or obstruction like we saw in August.

On Wednesday we started a seven day course of Vancomycin to treat her gut bugs. 'Vanco' is a really heavy hammer to swing since is usually reserved as a drug of last resort to treat particularly nasty resistant bacteria. But it is very effective.

Then on Friday Ellie had yet another upper GI study done at Children’s. We have honestly lost count of how many of these she has had but this study involves a baseline x-ray of her belly (a KUB for Kidney-Ureter-Bladder) followed by a trip to the fluoroscopy room where they put her on a special x-ray table that has a camera that lays over her in a sort of tunnel. After she is in the machine with her head laying on a rolled up towel watching a Kipper DVD, they attach a syringe of barium to her g-tube and inject it into her belly. The machine takes a lot of pictures and we all can watch the dye move through her bowel on a big video screen.

Then we wait 30 minutes and have another x-ray taken to follow the dye. Wait. Repeat. Wait. Repeat. Use fluoroscopy to manipulate her belly and try to move the dye and her bowel. Wait. Repeat.

Ultimately the study should end with the dye passing through her entire bowel and a big chalky poop. It should happen this way. But as with all things Ellie, not much happens as it should.

After four hours of very patient waiting, and a very enthusiastic Ellie running to get her next ‘picture’ taken of her belly things still had not moved through.

To possibly advance the agenda I suggested to Ellie that she try pooping. Instead, as we went in for the 5:00 PM last attempt at seeing things pass, Ellie decided to fart for us. A possible sign that things were moving, I asked her:

“Ellie, did you fart?”

“Yes,” she said with an angelic big grin. Proud as can be she then asked me “Do you sthmell it?”

I think that the radiology technician may never recover.

The study told us some things about Ellie’s gut. We think. UGI studies are a science but also have a huge amount of art to them. The dye is apparent and you can make some sense of what is going on but since Ellie’s plumbing is far from typical, you really need to know her bowel to understand what is going on. It takes a very good radiologist with some input from us and often some advice from her surgeon to truly understand what is going on.

What we found is that there likely isn’t an anatomical cause to her symptoms. This is very good news for us since scarring, healing and other things could cause the problems to come back even after her surgery in August.

The study did show us that her bowel is still dilated. This could be a return to the situation that she was born with and needed an ostomy but since the dilation is uniform and showed good motility it is more likely part of the dilation that we have been told is part of the expected adaptation of her bowel to overcome its lack of length. If the bowel cant gain absorbtive areas by growing longer it often expands in girth to extend the surface on the inside.

This is our hope.

The appetite is back and even after TPN last night Ellie woke up wanting breakfast. This is music to my pancake-making ears even if she only eats a little bit before moving on to eggs and ham.

Christmas is in full swing and we are hoping that things stay smooth through the holidays.

Tuesday, December 01, 2009

The third floor

Ellie and I had to go to Children's yesterday for a blood test and to get more Omegaven. On the way to the basement while we waited for the elevator, Ellie looked up at me and told me, "I don't like the third floor. That is where they put the tube in my nose."

The third floor, for those of you who haven't been to CHB, is the floor with the operating room, where yes, they do put NG (Naso-Gastric) tubes in her nose as part of surgery.

Ah, the joys of a very aware kid with medical issues. When we discussed that we also see Dr. Jennings on that floor, things got better very quickly.

Sometimes you have to wonder what she really remembers of all of her time in the hospital.

This goes along with her Thanksgiving discussion with her Grandmother about a picture that she drew in the hospital in September that is framed on the wall: "I drew that in the hospital when I was in the big fluffy bed with the table that goes across."

I'd like to know what that shrinks would say about her hospital stories.