Thankful

If we were to sit here and list everything we were thankful for, we would be here all night and would just be talking about the stuff you all have already read plenty about. We are very fortunate for our families, the professionals that have treated Ellie, and the great support that we have gotten from all over as we have moved through the early miles of this short bowel marathon. Thank you all for that.

One person that we are especially thankful for is Ellie's wonderful nurse, Karlene. Ellie absolutely adores Karlene and, even though Karlene has three kids of her own, she treats Ellie like one of her own. She combines being a great nurse with amazing experience with young kids and has been great for Ellie.

Karlene has also been great for Abby and I. With Karlene we can take a deep breath and let a professional take care of Ellie knowing that all of her medical needs will be met and Ellie will be very happy. Considering the complexity of Ellie's care and our concern for her plumbing, this is no small feat.

We truly appreciate everything that Karlene does for us and for Ellie.

Ellie shows her gratitude with snowballs:

Balancing Act

Today, November 20 marks one year with an ostomy for Ellie.

It also marks a full year of bag changes for Gib and I. It is still no fun to do them, but we our choreography is well worked out by now and only takes 5 minutes if we are together.

Needless to say, November 20th this year was lots more fun than surgery day a year ago.

Winter showed up today with the first snow fall. Ellie had a good time chasing Gus around the yard and even got a taste of her first snow ball. She liked it when Karlene and I threw them at each other but, she just wanted to eat hers. Speaking of eating…. Elle is acting great and if we didn’t watch her numbers so closely we would have no idea something was wrong. Ellie still isn’t in balance with her numbers.

The current theory is that with one of the colds that she had in the end of October she also got a stomach bug. This is the leading theory because the stool cultures did not grow bacteria or yeast. So a GI virus is now the likely culprit and instead of vomiting she had high output.

Apparently when you have a GI bug you lose the lining of your intestines and that is why you get so sick and have to eat such bland foods. i.e. chicken noodle soup. But with short gut kids this lining is 2 to 3 times thicker than normal kids, so when it comes time to re-grow the lining after a stomach bug, it can take 6 weeks. We figure that we are now in week number 3. Darn.

To help her intestines recover we decreased the rate on her milk pump from 29cc/hr to 24cc/hr. But this hasn’t solved the problem. So, tomorrow we talk to the GI team of the short bowel clinic and probably drop her milk rate much lower and take on a new night of TPN. During all of this she has not lost weight, but she has not gained any weight either.

The big concern with her “numbers” being so off is dehydration. We have had to hook her up for supplemental hydration 5 times in the past three weeks. That is more than as many times as we have done in the past 11 months. By giving her supplemental hydration we are able to stay out of the hospital and keep her electrolytes where they are should be.

The fact that we have to reduce Ellie’s feeds and back off on the oral foods is very frustrating because Ellie has just started to show a real interest in real food, not baby food. She will try almost anything we put in front of her and will eat most of it. I was excited that with Thanksgiving coming up she might actually eat some of the dinner. But now that isn’t an option.

So after all that, I have to reassure you that she is doing fine. My sister Emily is in town with her family so we have been out and about with them. And all this mess hasn’t slowed Ellie down one bit! She has had a blast playing with Charlie and Olivia. We went into Boston to the Children’s Museum and to visit Uncle Fred. We have also played in the snow and been to the park a million times.To Give you an idea of how high our crazy lady has climbed in the maze at the Children's museum, that is her Aunt Emily and Uncle Marcus below her.

Tea Party

Ellie is feeling better and her output is slowly getting better. She still isn't back to normal and we will start the anti-yeast drugs tomorrow. But she is up to new tricks. Ellie got a new table and chairs from her gramma and grampa in Maine. They were a big hit. She has been dragging the chairs all over the house, but today she really got into sitting at the table. But she likes to use the table with some new friends. She likes to share the seat with one of the bears and she eats some of the snacks and feeds the rest to the bears. Hopefully by Thanksgiving we will be able to get everything back under control. Until then we will probably be enjoying many tea parties.

Who's the better gambler?

I won the bet. My bet was that we would be home tonight, and we are. We went in at 9am this morning. Our day consisted of blood work, blood cultures, stool cultures, stool samples, and a KUB. She was smiling and happy for most of the trip. She doesn't like the blood lab or anyone associated with it, go figure, but other wise she was good.

We got results back on her blood work after we got home this afternoon. Everything looked good. Which means that her kidneys are handling the fluid loss very well. This was surprising considering how much fluid she has lost in the past few days, but we aren't complaining. The results on her stool sample indicated that she was dumping fluid. This can be caused by a GI virus or by irritation due to overgrowth of bacteria or yeast.

There is a possibility that the stool culture will be able to tell us if there is overgrowth and which type. But overgrowth is very hard to diagnose. We will just have to see.


We are going to see how she does tomorrow and if her ostomy output is still high then we will try an oral anti-yeast drug. We are not expecting quick results, Dr. Jennings said that it can take 4-6 weeks for the bowels to recover. So for now we watch her numbers and keep things simple.

We will go back to the weight gainer diet, introducing new foods and start pugging her ostomy again when her output gets back to normal. Right now Ellie is in bed reading while Gib and I try to stay awake. It was a long day but we are all home and doing well.

Out of Balance

Tomorrow morning we head to Boston for an unscheduled visit with Dr. Jennings.

Ellie's 'numbers' (urine out, ostomy output, stool in her diaper) have been creeping away from the very stable range that we have enjoyed for the last few months and are now raising some flags for us and her doctors. She is in great spirits and happy as can be but her numbers are a bit troubling for those of use that watch her charts like some folks watch the stock market.

Je suis une artiste!

We were warned when she had the ostomy put in that we would always need to watch her numbers to make sure that she was in balance and we have religiously charted every diaper and set of ostomy balls (balls!) since we came home. She is usually very good on balancing her input and output but over the last week or so the balance has gone away.

Today her ostomy output went over 1000 ml for the day around 5 PM. Her normal range is around 400-500 ml per day and when it hit 1000 we got in touch with Dr. Jennings.

He didn't want us to go to the ER but we are leading off the day tomorrow in his office hours.

There are a lot of reasons that this could be happening. She could have a stomach bug. She could have another kind of infection, virus, or yeast. she could have an allergy to one of the foods that we have introduced. There may be something else going on.

Whatever it is we want to have her checked out and make sure that all of that fluid that is going out of her isn't screwing up her electrolytes.

This may win us a complimentary stay at Boston's finest hospital to get her back in line and maybe run some drugs through her. We have dusted off our 'Go Bag' of essentials to get us through a stay in the hospital. toothbrush, pajamas, clean clothes, stuff for Ellie to play with etc. To be honest we had gotten a bit complacent and unpacked the Go Bag a few months ago.

Never a dull moment.

We are both dreading taking Ellie back for a stay. She is a lot different today than when we left 11 months ago:
We are guessing that she won't really like being confined to the floor all that much.

The current Vegas line is 3-to-1 in favor of an overnight stay with an over/under of 2 nights.

I'll take the under if it's all the same to you.

Dark, dark humor

And I thought that I was dark calling Ellie 'Gut Girl'.

Check out the great onesies that these folks have put together for kids with tubes, equipment and other issues:


http://www.plotkindesigns.com/tynietoes.html

Brilliant!

My favorite is: I can eat and sleep at the same time. Can you?

But I still think that the onesie that came from Abby's friends at the aquarium is best:

Bubbles

These are some quick pictures of Ellie during her bath this morning. She is too big for a sponge bath on a chuck so we bath her in the kitchen. The bib and towel are to protect her CVL and ostomy.
She gets to play with the water for a while and then we lay her down with her head over the sink to wash her hair. The towel around her middle gives us a good hand hold so we can stop her from going to far when she reaches into the water.
She has breakfast all over her face and a big snotty nose but I think she is still cute.