Still home.

We are still home, and Ellie is doing better. Wednesday was a scary day in the way of fluids. Ellie's ostomy output total for the day was 1,700mls (normal is around 700mls) and her urine was only 300mls. This would completely freak us out if we hadn't gotten blood work back that said her electrolytes were fine. That being said, Ellie did spend the whole day on an IV pump getting extra fluids to make up for her VERY high out put.We took her off of her formula and put her on Pedialyte and turned the rate way down. After some quality time with her best friends Kipper, Tiger and Maisy she started to feel much better. By the end of the day we even gave her a tiny bit of noodles, which she loved.It was nice to be able to manage her care at home, nice for all of us. Thursday she was doing much better and after checking in with Dr. Jennings three times (each time he was in the OR and still answered the phone) we started her back on a dilute mixture of Elecare and pedialyte. She did well on Thursday but Friday the her output went right back up. So we just went back to pedialyte and we will give bowel a chance to rest and try Elecare maybe today or tomorrow.
She is doing well today and actually had been in very good spirits through this whole thing. When we talked to her GI doctor on Friday, we had to keep explaining that she is sick, just not acting sick. Sometimes I wonder if this is side effect of the Omegaven? One thing that did come out of all this past week is that her admission for a endoscope study of her and motility study of her colon, that was scheduled for Monday, had been canceled. The GI doctor overseeing the study said that because her bowels took such a hit over the past week, the results we would get next week would be false. So we are staying home and have to wait another few months for a new study date.

So for now we are watching our girl, tracking numbers and keeping the "go bags" packed.

On a side note:
Two pieces of great news!

1. Carter Cates, see his blog He is a little boy from Texas that came to Boston for Omegaven. Omegaven did help his over all health and did improve his bilirubin, but his liver was too damaged. On Monday he got the gift of life in the form of a new liver, stomach, small bowel, pancreas and spleen. He and his family are doing well.
2. Tyler Paul April was born yesterday! See his blog He is the new son of our cousins in NH. He was born at 28 weeks. He is beautiful and big for his age. His mother's water broke at 24 weeks and she managed to hold out till 28 weeks. It was a very long 4 weeks, but very worth it. Tyler was transfered to Dartmouth hospital and doing well. His mother is still back at the original hospital recovering from the birth. It is very typical when a baby is transfered the mother is not, our thoughts are with her as it can not be easy to so far from her baby.
   

An Unruly Ostomy

Even though you would never know it by looking at her, Ellie just narrowly missed an admission to Children's today. We couldn't be happier to be home instead of having an unscheduled visit to Children's.

Ellie's ostomy normally puts out around 500 ml (~8 ounces) of fluid a day which is replaced by her elecare and her TPN at night. Since Sunday her ostomy has been dumping fluid pretty much non-stop and hit a new house record last night at just a bit more than 1300 ml. To put that in context she is losing around 10 percent of her 12 kg body weight each day as diarrhea out the side. For me to lose that portion of my weight would be gallons of fluid so we knew that we needed to watch this closely and have been giving Ellie IV fluids during her naps to make up for her lost fluids.

We first thought that it was something that she ate since new foods often take her out of whack for a day or so as she adjusts to them. We cranked back on her diet and fed her a lot of rice and other foods that she handles well. No luck. Her outputs kept going up. When she hit a new high last night and started towards another bad day this morning we called Dr. Jennings who asked us to come in and we packed our bags for an admission.

Fortunately her bloodwork came back this afternoon showing everything was in order and Dr. Jennings sent us home with instructions to watch her closely, be in touch with him and maybe come back tomorrow for more labs if things don't get better. It is most likely a stomach or intestinal 'bug' that will run its course but if it keeps going this way she could need other things besides her IV fluids and her nightly TPN.

Phew, another night at Children's would be lousy.

One of these days she is going to act sick and we are going to freak out. Today isn't one of those days. Ellie ran through the hospital this morning and is giggling herself to sleep right now.

So much for Memorial Day in Maine.

Educational Clinic

Many of you know that I work for a home medical supply company called NutriThrive. It all started last fall, when we needed an new HPEN company. We found NutriThrive and liked what they did. We signed up and then were asked to participate in their Nutrition Consumer Advisory Group. Just about this time, we were feeling pretty comfortable with Karlene and I was starting to realize that I didn't have to dedicate 100% of my time to caring for Ellie. I heard of a job opening they had for a Consumer Advocate. I jumped at the chance to tweak the system from the inside.

So now I am one of their Consumer Advocates. Most of my job is to make sure that all new and current customers are happy, well supported, educated and have the tools they need to be able to take care of themselves or their child. I also evaluate and help create all the educational material to make sure the consumers have good information when they first arrive home and then are well supported once they are home.

I feel like I am walking a thin line most of the time between being an employee and being a mother of a chronically ill child. Sometimes I think I need two a little hats, one that says NutriThrive and one that says Mother. My basic rule is when Ellie is with me, I am all Ellie and no work. As for the other families that we know, I don't ever want any of them to feel like I am pushing my company on them. Yet, when I hear them complaining about their supply company, I feel like I have to say something. Mainly because the major part of my job is to make things better/easier for people.

So now, on to the title of this post.

Continuing education of patients and their families once they are out of the hospital, is something that I think is lacking just about everywhere. This is something that I have wanted do try to fix for a while now. I have always felt that there is just not enough information available for people who are short gut, on TPN, on tube feeds, have an ostomy or a CVL. I know there are websites that are good, the shortgut wiki is great, but there needs to be more. Once you are out of the hospital your need for information gets greater, and it is just not available like it should be.

So through my position at NutriThrive I have been able to help set up a free educational clinic available to anyone who is on enteral or parenteral nutrition. We got professionals from local hospitals, and from OLEY to come give talks and host round table discussions. The details are below.

Educational Clinic
Improving life on Nutrition Support

Topics for speakers and round table discussions:

• Vitamin and Mineral Absorption in your gut.
  
• Caring for your Central line, what's new.
• Keeping Hydrated this Summer
• Advocating for you or your child
• Advances in Ostomy care

Lunch will be provided
When: 9am-2pm Saturday, May 31st
Where: Allen Riddle Building, Newton Wellesley Hospital Campus (Located behind visitor parking, near ER entrance.)

If you are interested in attending or
more information please email me at
abrogan@nutrithrive.com

I think I am more excited to attend as a mother than professionally. This is one of those times where I guess I will be able to wear both hats.

Side note: Ellie will be admitted next Monday to Thursday for planned tests.

Mama Come POOP!

That is what Ellie yelled to me a few minutes ago over the baby monitor. And sure enough, a nice big, stinky, well formed poop. Believe it or not we actually have a place where we log the color and consistency of each of Ellie's stools. We still get very excited about poop, as it still is an infrequent thing, and only happens with the aid of a suppository.

We had short bowel clinic this past Thursday, I guess they are calling it the CAIR(Center for Advanced Intestinal Rehabilitation) clinic now. They loved how she looks, and she put on a good show dancing up and down the halls like always. But, she hasn't gained as much weight as we had hoped. Last week she was almost 28.5 pounds on our scale at home, but on Thursday she was only 27.3 pounds, not enough to have lose a night of TPN like we hoped.

We credit the cold she has had for the past week for the weight loss. But, it still means that she isn't gaining as fast as she should. So we are going to go from 25 cal/ounce Elecare to 26 cal/ounce and continue trying to increase feeds. We are also going to look at pushing the solids a bit more. And we are going to start plugging the ostomy for a few hours each day to see what happens. We don't want to try too many things all at once, so we will try each new step over the next month.

Even though she isn't gaining she is still in the 70th percentile for weight and height, so things aren't too bad. But we would like to lose another night of TPN. Actually we would like to lose all the nights of TPN, but will settle for just one for now.

Of the short gut families that we know, there seem to be 2 trends that are going on.

1. We know 5 mothers that are pregnant again. Oops I mean 4, welcome Aubry!
2. We know 5 kids that are now off of their TPN and doing great!!!! Some of these kids started Omegaven or came to Boston because of Ellie's Blog.
   

We are not part of either of those two trends, as I'm not preggers and Ellie is still on 5 nights of TPN. But, we are hopeful, and look forward to fattening our girl up this summer.

No news is good news

I guess that we have fallen into the pattern where a lot of people discontinue blogs. If you have gotten into the groove and don't have a lot going on that is news worthy, there really isn't much to write about which is the whole point of a blog. It is very tough to motivate yourself to write that all is well over and over again even though I know that my mom likes to read it and see the pictures. I guess that makes us very fortunate that we don't have a lot of news and that Ellie is doing so well especially when you consider some of the kids that we know and their seemingly endless struggles.

The other thing that makes it tough is that it is Spring and we are outside a lot these days playing with Ellie on her swingset:

We are also teaching her to grow tomatoes, that she calls her 'babies':
Sitting down to write just isn't up there on the to-do list.

I promise that if something funny or important happens that it will go up here.

Now the update:

Ellie is continuing to learn how to eat and chew like a big girl in addition to her Elecare that she guzzles. She does very well with traditional pureed baby food and soft things like avocados but has needed some help to move on to things that are crunchy or need chewing. She would prefer to gum things with her tongue and swallow them whole, but that isn't very good for her digestion not to mention being unsafe. So we help her chew and demonstrate a lot of chewing in not so polite ways. she is getting the hang of it and is very proud to crunch and chew things for us. Our Occupational Therapist came earlier this week and had some great tricks and tips for us to help us along. In the big picture we have advanced Ellie's tube feeds to give her 56 percent of her calories from her tube and 44 percent from her TPN. If you throw in the three meals plus snacks every day we are closer to 75/25 split which is just great. With her ostomy still in place we can't advance much beyond this because of her need for fluids but we will see about some changes in the interim that will keep her moving in the right direction until we reconnect her.

We are in no hurry these days to reconnect her but want to keep moving things forward. Her ostomy output has been behaving lately which is good and keeps her away from needing extra fluids during naptime. Curiously she still won't poop for us without the stimulation of a glycerin suppository but when she gets glycerin, she poops very well for us. Nobody is quite sure what to make of this but hopefully we will know more in a few weeks when she has a endoscopy and motility study done at Children's. There is something not making sense and a look around might tell us why things aren't going so well. A good sign is that when she does poop it is of good consistency which makes us believe that her colon is doing its job of absorbing water. This makes us hopeful that she may not have the chronic diarrhea that is very common with short gut kids.

The most fun for us over the last few weeks has been Ellie's transition from sign language to verbal speech, a rapid switch that gives us head scratching moments every day. A month ago her Early Intervention specialists had some concerns about her language and brought a speech pathologist with them earlier this week. Just like when symptoms disappear when you go to the doctor with an ache, Ellie kicked it up a notch and stated speaking a week ahead of the specialist's visit. As Ellie played with them I watched the speech pathologist write every word Ellie said. Mom, Dad, Kar(lene), eat, noodle, ball, Gus, Book, and on and on it went. we felt a bit silly to have her there but the EI specialists told us that they were amazed with the change in a month and that they felt better after seeing the Ellie show. They will keep coming back each month to check on her but for now they are very happy with her and keep telling us that she is at or advanced for her age, developmentally.
Music to a dad's ears.

So on we go, in the groove and having fun.
More news and pictures soon.

Here's hoping that we don't have any newsworthy items anytime soon.

Oh, yeah, no rubber plug yet, but we keep looking for it. If it is in there it must be like the rocks that are in sheep bellies, bezoars, I think they are called.

I'll call professor Snape if I find it.

Happy Birthday Mom

Ellie's language is coming along and between her Ellie sign and her ever-expanding set of new words and noises she manages to get her point across very well these days.

Her favorite thing to say these days is 'big poop' (*whether it is true or not) along with her favorite game of going through the alphabet and telling us an animal that begins with each letter either with a word like Hippo, or a sign like alligator. No kidding, she is good for almost every consonant on a few of the vowels.

Today is Abby's birthday. Ellie met her mom this morning with the art project that she and Karlene did together and told her mom 'Hop pee', which made Abby's day.

Hearing something else than 'big poop' was a nice break.

The highlight of the day was our new swing set that Ellie's grandparents got her for her birthday, more or less.

My grandmother got us one when I was little and my mom really wanted Ellie to have one as well. Even though it was raining and gross this afternoon, we brought Ellie out to see it and it was all we could do to get her back in for dinner with a wet bum and soaking hair.

Something makes me think that Ellie will be a permanent fixture on her swings this summer.

A long awaited play date

We finally had a play date with Christian and his folks. They were up for their 3 month check up and were able to squeeze us in before heading back home.

Christian looks great and it took a while but both kids were finally ready to play with each other just about the time they had to go home. That also could be because it had been a over a year since they had seen each other.

Check out Christian the flirt

It was especially nice to have some time to pick Colleen and Bill's brains on their feeding secrets. Christian weaned off of the pump onto primarily solid foods, very impressive. With Ellie's age, this might be something we are looking at.
It was fun and hopefully we will get to see them when they come up again later this summer.
Thanks Bill for the great pictures!