Sledding!!!

Here is a montage of Ellie's first sledding adventure.

Details to follow.



Wheeeeee!!!!!!

Ellie went to bed tonight asking for more sledding (with her favorite signs-'More' and 'Please').

A Christmas U-Turn

I like these trees, and the songs but I'm not really sure what they are all about....

This week was another chapter in the long series of last minute adventures of Gut Girl.

We had a very nice low-key Christmas. We took Ellie to her (and her daddy's) first Christmas church service on the 24th, read Ellie Twas the Night Before Christmas and had a nice day opening some presents (even though Ellie had no idea why there were so many toys in our living room).

Ellie is most fond of her new potty even though she doesn't quite get it. She (and her mom) were so excited about it that they had to try it out in the living room:

And the bathroom:

And my bowel is this big......

This year was a nice prelude to what I expect will be a full-on Christmas with an almost-three-year old next year. Baby steps.

Our original plan was to take off on Wednesday to spend a week with my parents in Maine and let Ellie have a nice long stretch with her cousins instead of the mad dash visits that we usually do.

Wednesday morning we spent about three hours getting ready with a week's worth of stuff to take the Infusion Operation on the road. List after list of stuff was packed up and loaded, tetris-style, into the car.

At about noon we loaded Ellie and Gus in and made our way to Children's to pick up some ostomy supplies to get us through until the delivery comes next week. They are very good to us when we run into a snag between orders especially when Ellie's ostomy is misbehaving the way it has over the last two months.

Out comes Abby from the Children's revolving door and my cell phone rings:

'Gib it's mom. I have a cold, your sister has a doozie and the kids all have runny noses. Do you still think that you should come?'

And with that our plans changed and we headed home. We will get to Maine as soon as everyone is healthy but with another surgery in the works for the sometime in the next few weeks (we hope) we don't want to delay it because of an avoidable cold.

Total elapsed trip: 1 hour 12 minutes, including a stop for a sandwich on the way home. A big adventure.

We spent yesterday and today playing around the house:




but quickly learned that we would go batty if we stayed here for the next week. I don't work again until the 7th of January so we need to go somewhere for some new fun before we start in on the long stretch of winter. so today made plans for a short trip to Vermont to stay with Abby's brother-in-law's family at their house in northern Vermont.

Maine, Vermont it's all snowy so the bags stayed packed and we will load them up again tomorrow for a two night visit.

Ellie's teenage cousin will be there and Ellie adores her so we should be in good shape for a few days.

Maybe Ellie will get her first ride on a sled....

Christian's Re-birthday

1 year and 2 days ago a little boy we met at Children's hospital got a liver, small bowel and partial pancreas transplant.

It is hard to believe that this is the same little boy that we met in August of 2006.
Here is a link to watch a great video of Christian's re-birthday party.
video.google.com/videoplay?docid=-2702633552182627672&pr=goog-sl

You can see for yourself how great he looks. That video warms my heart and makes a bit choked up every time I watch it. Congratulation's to Christian for one great year and many many more to come and to his amazing parents and their big strong hearts.

Everyone please, please become organ and tissue donor today, as your holiday gift to the many little kids in the world like Christian. If you are already a donor, thank you, thank you, thank you.

a view inside

Ellie had her endoscopy study done this afternoon and it went off without any significant difficulties.

This was our first time doing day surgery and we were scheduled for a 1 PM slot on the operating room (endoscopy involves anesthesia so it happens in the OR even though there isn't any cutting). We followed the rules and stopped her Elecare at midnight and gave her just a tiny bit of pedialyte to get through the morning before arriving at Children's around 11:30 as they had asked us to be there 90 minutes ahead of time for pre-op activities.

1 o'clock came and went. Ellie was happy as could be even though her belly was empty and she was confined to a small space.

2 o' clock came and went. Happy Ellie watched some TV and had great fun changing channels on the tiny TV at the bedside.

3 o' clock we got an update that the 'case' ahead of us in the OR was running over because of complications and that is shouldn't be that much longer. Ellie continued to be an angel while Abby and I got progressively more hungry because of course with Ellie fasting we couldn't eat either. But how could I complain that someone else's kids surgery was complicated? All I could think was how much it must suck to have your kid in the OR for too long.....

Finally as the Pre-Op room was getting very lonely, Ellie was wheeled in to the OR and put under around 4:30.

At about 6 we met with ther GI doctor who did the endoscopy and he told us that there wasn't a whole lot to report. From above, things look normal- esophagus, stomach, etc. When her went in through her ostomy things looked good as well without any signs of disease,infection or injury. What was interesting was that even with a the best scope that they have, he couldn't find the 'chimney' that connects her colon to her small bowel near her ostomy until he was almost done and investigated a tiny wrinkle in her small bowel where her found the opening to her colon. No wonder nothing is going down and a lot is coming out her ostomy- the hole for things to go down has almost closed as her small bowel has come down in diameter. Just what we had suspected to be the case her ostomy did its job but in the course of bringing down the size of her bowel it had changed the original set up.

So now we wait to hear what Dr. Jennings thinks and make a plan for the next step. He was in the OR today watching the whole thing so he already knows what is going on. There is little doubt that her anastomosis (connection site) needs adjustment but the question is what adjustment do we do and how does that play into the overall plan. We will probably talk next week about where to go from here.

Ellie recovered nicely from her anesthesia after an hour or so of watching her new pink DVD player in the recovery room. Somehow Barney made her feel much better than either Abby or I could. Great. A damed purple dinosaur is better than mom or dad.....

We hooked her up to her nights infusion while we were still int he recovery room and headed home. Ellie was asleep in her own crib by 9 PM.

We are expecting a few bumpy days as she recovers from this 'minimally invasive' day but overall we expect her to bounce back pretty quickly.

If her blowing kisses and giving high fives to the nurses as we left the recovery room is any indication we should be just fine..

No answers, yet.

Ellie's stomagram was uneventful today. She handled the procedure much better than others and we even had her laughing at one point while on the table. We thought it was great, I'm not sure the radiologist agreed. But the end result was that it was next to impossible to see if the contrast went up or down. So, no answer.


Now, we wait until Friday's scoping. We have been warned that Friday procedures can take awhile to happen even though you have an appointment. Great. We will just come ready to stay for a while and bring the PN to hook up if we need to. This is an outfit of Ellie's own creation. Fairy wings + baby legs worn on the arms.

Studies

We had a bit of snow up here.....then rain, then ice and then a bit more snow. You've just got to love this New England weather. Good thing Ellie loves the snow.

Ellie’s output out of her ostomy is still high. It has been high since before Halloween. Antibiotics for bacterial overgrowth didn't work and she is showing no signs of yeast over growth. One other possible cause of her high output might be that food is no longer able to go down her colon and instead everything is going out her ostomy. We assumed that she was not pooping any more because she was dehydrated. But it could be that it is the cause not the effect. The connection between the small and large bowel could possible have gotten smaller. Or that the layout of her bowel has changed. It could be that the problem is mechanical not medical.

So last Wednesday Ellie had a contrast study done on her colon to see if there were any kinks or narrowings of her colon. Everything looked great with no problem areas. They said that she had most of her colon, and that it looked great. Nice and big and the same size as her small bowel, a big change from the micro colon she used to have. Good news, but still no answer to our problem.

So tomorrow we head in for a contrast study of her ostomy with Dr. Jennings. Hopefully we will get a better look at the connection between the two bowels. Then on Friday we go in for day surgery so that Ellie can have her bowels scoped. They will pass a camera down from above so they can take a look at her small bowel. Hopefully they will be able to take a sample of the liquid at that time to test for any over growth. Just to cover all our bases. Then they will take a look at her colon.

So hopefully by this weekend we might have a better idea of what we are dealing with. Or not. But we have to try. She still looks great doing great, but she still needs extra hydration every three days.

Okay, after all that, if you looked at Ellie you would never know that anything is out of whack. She has taken to singing. Sometimes you can recognize the song and other times you just have to sing along with the babble. Also, Sadly Gib and I have also realized that Ellie has better rhythm and is a better dancer than either of us. This can be seen in the video clip below.

I was waiting for her to start twirling the swifter around like a baton. And those are baby legs that she has pushed down in a very Flash Dance style.

Other good news, the 22nd will be Ellie's friend Christian's one year anniversary of his liver and small bowel transplant. He looks fantastic and is doing very well.

A year on our own turf

Today marks one year since we moon walked out of children's with Ellie for the first time. Yes we were back for two short stays since but as far as long visits go, we packed up our show a year ago today.

It seems like years ago that we were there every day and virtually living on the eighth floor of the hospital. It also seems like years ago since Ellie was the tiny baby that we brought home with us.

Seeing today's dancing running and jumping Ellie and knowing how comfortable we would be with taking care of her would have made leaving not nearly as scary. Hopefully someone else will see what fun she is right now and realize that life at home with tubes isn't all that hard and that a baby with tubes can be, as they say, 'typical' even with all of the medical obstacles.

Christmas last year was great with a house full of family on hand to spend Christmas with us and Ellie with her new pumps. This year since Ellie knows a little bit more about what is going on (she says Ho Ho Ho when she sees Santa) we will have some time at home with Ellie and her favorite tree and then get adventurous and take our show on the road to visit family.

Todays video is of Ellie opening the new animated snowman that her great grandmother sent to her this week. This is her first time seeing the snowman:


Ellie is definitely a better dancer than either of her parents.

Clinic

Ellie had her scheduled Short Bowel clinic appointment at Children’s today. When things are going well we have gone two months or more between clinic visits but with her ostomy misbehaving they wanted to see her after just one month this time.

The overall results from our visit is that everyone is still very pleased with her growth and development which as continued despite her ostomy issues over the last 4-6 weeks. Her weight and length are still right in the middle of the growth curves for her age which is very exciting for us.

Clinic is a series of meetings with different specialists that make up the Short Bowel Program (or Center for Advanced Intestinal Rehabilitation, CAIR as it is now known).

Today we met with six specialists. Everyone spent their time with us thinking and talking about why her ostomy is losing fluids like it is and thinking about a solution. It was like being in an episode of House with giggles.

Here’s what we know-Since we ran Ellie through a week of an antibiotic called Flagyl last week, we are pretty sure that it isn’t a bacterial infection. Since she doesn’t have any signs of a yeast infection like a rash, we are pretty sure that it isn’t yeast.

Which leaves her plumbing as the culprit.

The consensus among her surgeon and the short bowel team is that when Ellie’s ostomy was put in we wanted her bowel to shrink and get stronger while allowing some food to go down the ‘chimney’ to her colon to let her poop. All evidence so far shows that her small bowel is much smaller and stronger meaning that we have accomplished that goal.

Unfortunately this shrinking has changed the connection between her small bowel and colon. We think that the chimney has gotten smaller which makes it harder for food to go down. If all or most of that food that used to go down to become a nice poop for us is now going over the top of the chimney and out her ostomy, it would explain the high outputs and lack of poop very nicely.

To check out this theory and also rule out any blockages or other complications we are going to run another series of tests in the coming weeks to watch things move through and then maybe run an endoscope through her bowel to look around.

If all else fails and we can’t find a reason for the trouble there is always the possibility of simply reconnecting her to let all of that liquid go into her colon to be reabsorbed- the way her body is supposed to work. The doctors would prefer to resolve the output issue before reconnecting her, though, just in case there is another problem in the works.

We all agreed that we would be much more worried about her huge outputs if she weren’t so happy all of the time or acted even a little bit sick: But so far she is in great shape and it is more of a nuisance than anything right now. Ellie was in great spirits for the entire clinic including an ostomy bag change which gave the surgeons an opportunity to jam their fingers into her ostomy. Yeah really jammed it right in there and felt around. I guess if you are the one to make the ostomy, you can do whatever you want…..

During most clinic visits our appointments take up the whole afternoon. Today we needed to get blood drawn so we got there early and had an our free before our appointment so we took Ellie up to the inpatient floor to see another family with short bowel that is in Boston and just had surgery. While we were there we saw a lot of nurses that we had known while we were in the hospital and showed Ellie off to all of them who knew her when she was small and bald:

Seeing her curly haired and running a year later was good fun for them, I think.

Apparently the short bowel clinic is very busy these days and one of the great nurses told us that they call the floor Short Gut Alley since it is full of kids with short bowel. Knowing that all of those kids are likely on Omegaven is really encouraging.

So we wait to schedule a set of tests and continue to watch Ellie very carefully with new instructions for rehydration that will make our lives a lot easier. The TPN guru told us that we can run her rehydration fluid (5% dextrose) as fast as we want which means that we can get all of Ellie’s fluids into her during her afternoon nap and avoid time attached to the IV pole.

Running kids and IV poles don't mix very well.

Christmas Season Begins Early

We have had an very active few weeks chasing both Ellie's gut and Ellie herself.

On the gut front, she is still having the highest ostomy outputs that we have ever seen, which is a concern for us but not an overwhelming concern since Ellie feels great and doesn't miss a beat even when she is a running half a quart low on the fluids. This does mean that we have too hook her up to an IV every now and then when her numbers are really out of whack and let her have some fluids while she has a nap. A few hours of fluid and the dark circles under her eyes go away and she has very rosy cheeks again.
We're not sure why her output is so high and there are lots of theories. We have just finished seven days of Flagyl, an antibiotic to kill any bugs that might have carpeted her gut. She may also have a yeast infection. She may also have some kind of an allergy. She might just be working with a fully functional bit of bowel that's job is to secrete large amounts of fluids into her bowel (that would be reabsorbed in her colon if it were fully attached.) Take your pick.

The bright side is that she is very happy and giggles all day long while she does every dance that the Wiggles teach her. Stand on one foot and shake your hands? Oh yeah, she's got that one down.

We are getting ready for Christmas and took Ellie to the tree farm on Sunday to get a tree. she thought that the walk in the field was great fun : though she wasn't quite sure what to make of a running nose in the cold.

We will put the tree up in the next day or so and let her loose with the more sturdy decorations.

Even though things aren't super smooth on the medical front, we are having lots of fun these days and are looking forward to more fun: