Friday, March 20, 2009

Normal Kid Fever

No line infection just normal kid chest cold with fever. Wednesday afternoon I got a call from Dr. Jennings that her C-Reactive protein was normal. So that with a low white cell count pretty much completely ruled out a line infection. So, I took a deep breath and then realized that a line infection I know how to deal with, a kid with a cold with fever... I have no clue what to do. So I called Ellie's Pediatrician and got her last appointment that night.

Lungs sounded good, and O2 levels were good. So, it is a virus with fever that we treat with Tylenol. She and I created a care plan for that night and for the next few days.

She is doing well. Yesterday her temp as down to 99.0 but then today it is back up to 102.6 at the highest. So she is hanging out on the couch, snuggling with Gus and watching a lot of TV. Her new obsession is Mrs. Spiders Sunny Patch, a video that I think she got from her Great Aunt.

The good news is that bowel wise she is handling this well. We are giving her supplemental hydration everyday just to stay on top of her hydration. All in all she is doing well. She is still her normal silly self.

On the short gut front. I have added a bunch of new names to the list of short gut blogs, caringbridge sites, and carepages. New additions are Austin, Blaise, Caed, Chase, Danny and Zak. I know there are more and I will add them later.

Feeding Super Star

Danny is one of the new blogs, his blog tracks his progress at an intensive feeding clinic in Richmond, VA. He arrived at the clinic just over a month ago eating nothing by mouth and 100% tube feed. Now he is eating 50% of what he needs by mouth and getting the other 50% by tube. The goal is to have him go home feeding 100% by mouth. He has made some great progress and is a great example that it is never too late to start eating by mouth. GO DANNY GO!!!!

Wednesday, March 18, 2009

101.4 F

Yup. Our first fever in 2 and a half years. But I think it is due to a bad cough Ellie has had on an off for a while now, not her line. Ellie and I did spend the morning and most of the afternoon at Children's with Dr. Jennings. He had us come to his office rather than the ER, which was very nice.

We drew Blood for Cultures (just to be on the safe side) and for CBC. Everything looked good on what we got back today. We will have to wait a few days for the cultures. But the best news is that we are home. We drew blood from her line (for the first time in a almost a year), took a walk, had lunch, ran into another Omegaven family in town for clinic, got a call from Dr. Jennings and came home. Ellie had a great time, I am ready to fall asleep here in front of the computer.

So now I have to take care of the other half of Ellie, the normal kid half. I just treat her like any other sick kid and call Dr. Jennings if anything changes for the worse.

I'm not surprised that this happened. If you remember last year when Gib was away on this same trip, I OD'ed Ellie on Omegaven = 7 hours in the ER in the middle of the night, and then I got sick. So this year, Ellie gets sick and we are back at Children's. Go figure. I don't want to read to much into this, but.... Dam, what is going to happen next year?

Monday, March 16, 2009

In love, but not with the plug.

We had a visit today from our nutritionist through NutriThrive and I am in love. I got more out of her hour long visit then I have gotten at the past 5 clinic visits. Mainly because we were in our own home and I had all the time I needed to remember the 3 Billion questions that are bouncing around in my head all day. She reviewed all of the foods we currently feed Ellie (including going over the ingredients on the label of everything) , did the same with all her vitamins and fish oil, gave suggestions for new foods and then showed me when looking at the ingredient list on foods what bad things to look out for.

News to me, when it comes to short gut:
  1. Onions= BAD. Big producers of gas and hard to digest. Not a huge problem now but our goal is to reconnect and it will be a problem then. (Green Peppers fit this bill as well)
  2. Difference between soluble fiber(good) and insoluble fiber(Bad). ie, the fact that Ellie likes to peel her beans before she eats them is a very good thing.
  3. Beans are a big source of pectin, I thought it was all in apples. (pectin is very good for slowing small bowel transit time and apples are not Ellie's friend)
  4. Onions produce more gas than beans.
The list goes on and on, but that is all I will force to you read. It was great and when we were done I wanted to give her a big hug and a kiss. The only bad thing was that Gib missed it. I know he also has questions bouncing around in his head and would have loved some answers too.

He is in VA this week for work so I am flying solo, with my wing man Karlene of course.

Below is Ellie singing Bushel and a Peck before bed. She usually sings this with her dad, a when I told her we were making a video for Daddy, this is what she wanted to do.

Ellie is doing well but not doing great with the plugging of her ostomy. Gib and I have been talking it over and I finally called Dr. Jennings today. He agrees with us that the plugging doesn't seem to be working, and that this doesn't look great for full reconnection of her intestines. He also agrees with us that there may be something mechanical that is not allowing all the food to go down her colon. This could be kinks or sharp bends in the colon right below the connection with small bowel.

So this means we start talking about the next step. Right now that step is meeting in person with Dr. Jennings and deciding how we can fix this. And most probably that fix will mean another surgery, I think that would make the grand total around 6, excluding CVL placements. I know, YUCK. This one would not be a full reconnection of her bowels, since she is giving signs (vomiting) that she cannot tolerate being fully reconnected. What we all want to avoid is the possibility of taking down the ostomy just to bring it back up in 6 months. So we will find a happy medium between Jejunostomy (where we are now) and fully reconnected.

Other than all that things are good. Our lives are about to be turned upside down for good reasons in a week. We are renovating our house. Gib and I started some of the demo this weekend and found evidence of past tenants that had been living under our kitchen floor(bigger than mice, we're thinking chipmunk). Luckily they were long gone, but it was still very, very gross. We are excited to start, and know that in about a week we will be ready for it to be over.

On other fronts, I know there are a ton of new short gut families that are out there and I would love to list them on our blog. If you are a reader, have a blog and would like us to list it please email me. (see link on the top of the column to the right)

Well that is about it for updates for now. I leave you with Ellie's message to her father.

Wednesday, March 11, 2009

A set of pictures form the last few weeks

Not a lot of big news around here.

The Cipro seems to have done its job and we are back on course and even plugging her ostomy for longer periods now. When it works, things go 'down' and we get more action below and when it doesn't, we get a gush when the plug comes out. Not a lot of rhyme or reason to it as far as we can tell. We will take the goods and take the bads and see where it goes from here.

The best part is that Ellie is wonderful and lots of fun.

As pictures are worth thousands of words and I don't have a lot of time to write here are some good ones from the last few weeks:

Ellie the ballerina-

Debuting at the 2016 winter Olympic, Emesis Basin Ice Skating

I'm Super Ellie, underwater Super hero

These boots are made for.....

Abby after her Locks-of-Love donation this week.

We'll try to be better about updates. We have each composed a dozen posts in the last few weeks but when it gets down to it, they just don't go from our heads to the screen.