Friday, June 19, 2009

Homeowners claim: Pump vs. Window

So Gib left today for a fishing tip with his dad and brother. They do this every year, and I love that they do it. I honestly think Gib needs to spend more time fishing. I may regret that statement soon, but oh well.

I discovered tonight that even though it has only been a week or so since Gib was gone last, I am out of practice. I didn't get Ellie down for a nap until 2:30, and then didn't get her hooked up until almost 8:30 tonight. That means she will still be hooked up at 8:30 tomorrow and then she also decided to finally fall asleep about 15 min ago. Yes, that would be 10pm.

It was a combination of me being slow, Ellie not having an appetite because she is getting a cold, the sun finally coming out for the first time in two days at 6pm (we just had to go puddle jumping), a pump malfunction and Ellie wanting to talk to daddy on the phone. I have to say that other than really, really, really wanting to chuck an Omegaven pump through the window it was a good night. All I have to say is thank God for back up pumps.

Ellie is doing well. We are on only 4 nights of 500mls of TPN and 3 of D5. It is a huge change from the 1500 we were on before. The bags are so small. It feels weird giving her so little and I feel like there is no way that can be enough. I also feel like I am starring at her all day just waiting for the sign of dehydration. But so far so good. She is getting a cold so we will see how long this lasts.

Bottom line. We are good, busy, frazzled but good.

Wednesday, June 17, 2009

Way to go Omaha!!!!!

Nebraska Medical Center is one of the bigger short bowel centers in the country. And they have started an Omegaven trial. YAHOOOOO.

Here is a quote from the article:

"The Nebraska Medical Center recently began giving it to two children and intends to give it to Braxton and others soon to study its effectiveness. Dr. David Mercer, a transplant surgeon at the hospital, expects to enroll more than 100 children in the study over the next two to five years."

Read the whole story here

On the home front, no news is good news Ellie is doing really well. We have cut her night time hydration down by 2/3 and she is starting to eat more and more solid foods. We are relearning what she can tolerate but she is doing well. More later...

Friday, June 05, 2009


Need we say more?

Cross your fingers, Cross your toes

We have been told that today is the day. So knock on wood, cross your fingers, see a penny pick it up, do all that good luck stuff and hopefully we will be heading toward the door soon.
The view from Ellie's bed
Sorry about the last post, it was supposed to be video of Ellie riding a big wheel all around our floor. But try as we might we can't get it to load as anything other than a picture. Oh well, trust me it was good to see.

I was joking with one of the nurses that they should pay us to come in once a week and have Ellie ride her bike down the hall or race the big wheels around, just to show all the new parents how normal (sorry Gib, Typical) she is.

So now we start the wait. The discharge wait. We are very used to the fact that when they tell you that you will be discharged today, even though it doesn't seem like there is that much to do, it will take all day. If we are out by 2pm we will be doing really well.

This is Ellie's bed here at the hospital. She is very into the Fancy Nancy books and wanted her room here to be "fancy." She got a lot of help with balloons from her Aunt Beth, and her boyfriends Max and Christian. We also got to see some friends while we were here, Chase is here getting rid of a line infection and so we were lucky enough to be able to spend some time with him and his folks.

Well we're off for a few laps around the floor while Ellie and I wait for Gib to get here and for everything to fall in to place for us to get OUT A HERE!

Thursday, June 04, 2009

Ya Hoo!

She's back.

Nuf said.

Start feeds today and are loooking for the door late Friday.
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Tuesday, June 02, 2009


This afternoon we went on a wild tour of the hospital with Ellie in a go-cart.  

For the first part of the ride she was content to just sit and enjoy the ride until she saw the playground that lies in the inner courtyard of the building complex.  Then despite her wobbly legs and sore belly, she made it very clear that she wanted to get out and play.  Not just look, play.

So what are two parents to do when their post op-girl tells them that she wants to play?  We got her out and guided her drunken-legged self through the climber and out the other end.  

The girl is coming back.

Then to add to the good news, we made a pit stop in the Patient Entertainment Center for a round of Pac Man and an impromptu dosco session.  Really.  Not that we need much of an excuse but there we were dancing to Abba at 4PM on a Tuesday.

But the crown jewel of Abby and my afternoon was the trip around the 10th floor and Ellie's stop to tell us that she was pooping.   

Yahoo!  Just what we were waiting for.  An enormous, off-color post-op poop.

Out came the NG tube and we are now down to three tubes: a central line, a g-tube and one lonely IV line in her hand for drugs that are incompatible with TPN.

To celebrate we walked some laps of the floor and met Ellie's uncle Fred, the highlight of her day.  
Fred is at the top of her list of favorite people and seeing him was just perfect.

Tonight we are going to switch roles and I am in with Ellie while Abby gets some much-needed home time.  

Ellie said goodbye tonight:  "Goodbye Doctor Mommy!"

Gus is going to lose his mind when he sees his alpha female return.  He has had a long week.  

Almost as long as Abby's.


Gib and I knew that it was coming sooner or later, honestly we were both hoping for later.  

I was trying to get Ellie to go to sleep last night and she started crying and said.  "Mommy, I want to go home now, I miss my dog Gus, my bed and my house.  Why are we still here?"  

As you can imagine that was the beginning of a long talk that I had been dreading.  I tried to explain that she just had a big surgery on her belly and her stomach was still sleeping.  That we needed to stay here to wait for it to wake up.   Also that the doctors and nurses here were able to help her more than we could with just mommy and daddy at home.  

But then I got, "But why do we always come to the doctor? We are here A LOT."  


We talked more about it and how we were working with the doctor to make her stronger and healthier.  And how she was special and that this might take a while.  I congratulated her on being such a strong and brave little girl and that she was doing a great job.  

Then I got, "No I not brave, I'm scared."  


I did the best I could with no prep.  We talked for a long time, it was not easy or fun.  Got her calmed down, told her my version of sleeping beauty and finally got her to sleep.  

I laid there for a long time after she fell asleep just thinking and in awe that my 3 year old just had that conversation.  I felt like I was talking to the 12 year old Ellie not the 3 year old.  I also realized that Gib and I both need to get ready for more of this.  That probably means talking to some one who specializes in this kind of thing.  Luckily I think we are in the right place and will be able to talk to some one today.  

It was hard seeing happy go lucky Ellie be so not happy go lucky.

Other than Ellie shaking her mother to her core, the night was uneventful and we both got a good night sleep. 

She was up and ready to party at 5:50 this morning and has been playing ever since.  We are still waiting for signs that her bowels are awake = clear fluids from NG and G tube, and better yet, farting or pooping.  

They should warn you when your child gets diagnosed with short bowel syndrome,  that  your life will revolve around poop.  Poop! Poop! Yea Poop!  For now we wait and watch. 

Monday, June 01, 2009

The inventory of tubes and wires got a lot shorter yesterday evening. Ellie was quite active during the day yesterday and wanted to squirm in her bed a lot. Over the course of the day this dislodged the epidural in her spine, which had to be removed at bedtime last night along with her foley catheter.

That leaves:
  1. 1 NG Tube to suction
  2. 1 G tube draining to gravity
  3. 3 EKG leads (to monitor her heart and breathing while she rides the morphine wave)
  4. 1 central line that branches to three spearate pumps
  5. 1 peripheral IV line in her right hand.
  6. 1 Pulse/Oxygen meter
We are down to 8 lines/wires and a new pain management strategy. We even got her out for a stroll this afternoon in a 'go cart' the modified whellchair that lets us bring pumps and drain bottles with us:

Ellie slept well last night on morphine doses every few hours along with a steady stream of Toradol, the new fangled pain med that helps wean away from heavy meds to more reasonable meds like motrin and tylenol. Every now and then she gets uncomfortbale but that lasts only as long as it takes to get the nurse to hit the Patient Controlled Adminsitration (PCA) button and give her some more drugs.

Ellie has been in a mommy phase for a few weeks. She has no interest in me and wants mommy whenever things aren't great (and even sometimes when they are). This has been good fun until this week when Abby can't leave the room. She will hit the 84 hour mark tonight at 7. Three and a half days without going home.

She is a rockstar. And it doesn't look good for tonight even though I have my stuff here for the overnight.

Super Mommy!!!