Sunday, October 19, 2008

Overdue Update

We have to apologize for not updating more often but with things moving so smoothly we are just having too much fun to sit down and write about our daily activities. More importantly Ellie has been remarkably stable in the past few weeks and when things are good it makes it seem like there isn't much point in telling everyone that things are good. One email from another parent about their troubles with an SBS toddler reminded us very quickly about how things can go in the toilet just like that so I will take this opportunity to deliver a rave report about the amazing Gut Girl.

With TPN pared down to just 3 nights a week she has just now started to gain weight and grow again. We would have been happy if she held her weight after losing the night of TPN a month ago but her weight is actually up to 14.4 kg and almost 37 inches this week. This places her squarely in the 75th percentile for both height and weight for 30 month old girls. This points to the likelihood that some of that food that goes down the hatch is finally being absorbed- a very good sign since increased absorption is the goal for her. She keeps shoveling meat and noodles and vegetables and when it doesn't come out whole or in a recognizable form, we know that we are on the right track.

We have even dialed down her elecare intake each day to 1000 ml to encourage Ellie to eat solid food instead of drinking liters of formula. To think that just a little while ago we were doing everything we could to get each last ml into her and now we are limiting her formula! Solid food is another goal so this weight gain is a great sign for us.

Ellie had her 30 month evaluation for Early Intervention this past week. It was quite casual for all of us and Ellie did the evaluation tests like they were new fun games. In the end she maxed out all of the tests that were applicable to her and tests at 35 months for everything except things like toilet training (1500 ml of TPN every night sort of shoots that one down), and feeding (we know that she is sort of slow on the feeding skills). Not to brag but I'd like to send this report to the doctor who told us that she would be delayed. Delayed my ass.

The upside of this is Ellie likely won't need a lot of Special Ed services (like PT, OT, or speech) when she goes to preschool. The downside of this is that since she won't need services, the town won't pay for her preschool. I'll pay that tab happily if it means that she has beaten the odds for hospital kids. We are going to make sure that her medical disability is well documented because we can't predict what is coming next week let alone next year and want to make sure that accommodations will be made if, for some reason, she misses school or if the reconnection surgery changes her situation like it possibly could.

We will start the process of transition to the school department in the coming months and hope that things go as well as we have been told to expect from our local schools. When I spoke to the early childhood coordinator a few weeks ago about Ellie, it was funny when she told me 'we've had kids with nurses, kids with ostomies, and kids with feeding tubes.'

'Ever had one with all three and a central line?'

'Um, I can't say that we have.'

'Yeah she's got the trifecta. But you wouldn't know it unless you opened the hood.'

She was stunned. I guess most parents don't talk about their kids like racehorses or hot rods.

So onward and upward.

Still no word on scheduling the coveted manometry study. that will hopefully give us the green light to reconnect her. There is only one GI doctor at Children's who does the study and he is a very busy guy.

Also no word from the geneticist about Ellie's tests. Apparently there are some studies that link Ellie's condition to a genetic trait and before we sign up for another little one, we want to make sure that we aren't playing against a stacked deck.

I am off to Washington for a long overdue visit to the Oceana mother ship. Let's hope that this trip is easier than the last time I flew away for work.

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!