Friday, October 03, 2008

The backpack is back.

As it is with all good experiments, sometimes you don't get the results you want. It seems that Ellie needs more time on the enteral backpack than we hoped. About three weeks ago Ellie started showing signs of low hydration around 4 pm everyday. All of her other numbers looked good, but she was still looking dry. So, we added 2 more hours of pump time to each day; on at 8pm and off 10am. As of last week she has also stopped gaining weight too. Then this past Wednesday we decided we needed to add two more hours back on. So now she goes on the enteral pump at 8pm and off at 12 noon.

Now remember at this time we are also running the experiment of one less night of TPN (we are at 3 nights of TPN and 4 of hydration). I know, I know we increased the variables so now we don't know if her lack of weigh gain is due increased time off of the enteral pump of if it is due to less TPN. We are really hoping it is the enteral pump. We are willing to add as many hours of enteral pump time as possible if it means we don't have to add the night of TPN back on.

We haven't been to clinic in almost a month and we are a bit nervous about how she is doing. Fortunately we have had the clinical reviews with NutriThrive. About every two weeks we have a conference call with her nutritionist, clinical nurse and pharmacist to review her progress and see if we need to change anything. This is great, because I really need/want the peace of mind that I get from knowing that some one else is watching her just as closely as we are. During our last call we reviewed her status and they were also concerned about her lack of weight gain. Upping the hours on the enteral pump seemed like the next step and they gave us some great ideas for new food options.

So, the backpack is back. She still has free time from 12-8pm everyday and luckily the backpack doesn't slow her down. And other than all that she is doing pretty well. We keep wondering how she is handling the reduced TPN and really blood work is going to be the best indicator so we are going to schedule a clinic for sooner rather than later. The trace elements and fats are what is concerning me the most now. We will see...

Just a quick shout out some of our friends.
Carter: Stay on that cannula, you and your parents have been through enough in the past week. We have been watching your ups and downs are so excited to see things are getting better. You are one amazing kid.

Eithene: We are thinking of you and hoping that they find a solution that will work for now and for the long term. I'm so sorry for everything you have had to go through just to get a port! We are thinking thoughts of tough veins and quick recoveries.

Ryan: Congrats on your first night off of TPN!! YAHOO!!!!! We are so excited and are keeping our fingers crossed for you and your folks!


Anonymous said...

Hey guy and girls :)

Sorry o hear he backpack is back for a few more hours- but really, its a huge accomplishment to have her off it for any time at all- at least in my book!

I was wondering, how do her blood sugars do the hours that she is on no feeds or TPN? We have a terrible time with Eithene - she has to have sugar infusing constantly! Does Ellie have issues like htis- and if not do you have a secret that helps her stay stable?

I hope you can get into Dr Nurko soon- we have also been trying to get into see him for several months (since May) with no luck until now. After this last week's events it looks like we MAY get an emergency "to the head of the line" pass for the manometry. Of course, I don't think that's quite what you are looking for ;) but I do hope you can get in soon!

Thanks for the thoughts being sent our way- I am still in a shock that we have basically lost almost all her line sites when she hasn't even had that many lines, and she's only 2 yrs old! I'm praying this works out somehow.


Anonymous said...

I think Connor and Ellie's guts are going through the same things right now. We are having to put him back on his pump too. He lost weight this last month. We were probably getting to aggressive with the amount of time off of it!
-Erin Maruska