Washed away at Oley

Greetings from the washed out Oley conference in soggy St. Petersburg, FL.

Our first sir travel experience was flawless and the research that Abby did doe a work proved to be spot on for air travel with TPN. A good TSA guy is rare but worth their weight in gold expeciallt at 5AM.

JetBlue. Cable is magic.

The story of the week is rain. Lots of it. Like near record, Led Zeppelin 'When the Levee Breaks' rainfall days- today Tampa got close to 5 inches of rain just today.

Sandbags? Those don't look like FEMA bags..

Glad we remembered the raincoats on the way out the door. Really glad that we brought sunscreen from home instead of forking over all that $$ for stuff we won't really use. We have still managed to get outsode every now and then but it has been pretty soggy:


Oley has been a good trip. Abby is here for work with NutriThrive and is officially a member of this year's Oley faculty since she gave a talk about how to navigate through a short bowel clinic appointment.

Since Ellie had no interest in the Oley daycare, it has been a Gib and Ellie travelling circus for two days. Which has been great since Ellie is the best partner in crime short of her Mom. We have been everywhere together this week and she has been just wonderful.

I even took her to the hotel bar tonight to get my first beer of the trip tonight . I stopped short of letting her order for me but was really tempted to let her ask "Sam Summer, Pwease!" Ah, good old family values.

Even without seeing a lot of talks we had a great time seeing families of kids with short bowel and other digestive issues including afew that we had corresponded with for a long time before meeting this week. Seeing Ellie run around with 2-3 other kids with backpacks was good to see and in the future it will be good for her to know other kids with similar equipment even if their diagnoses are much different.

We hope the weather gets better tomorrow. We are taking the plunge and bringing Ellie to see Cinderella at Disney until Saturday when we fly home. Seeing all of these kids made us realize that despite her progress things are still quite uncertain for Ellie and we need to seize this opportunity.

Besides, think of the look on her face when she sees her cast of princesses? we'll be sure to take lots of pictures.

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.

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

http://omaha.com/article/20090611/LIVING/306119953

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...

HOME!!!

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!

Ya Hoo!

She's back.

Nuf said.

Start feeds today and are loooking for the door late Friday.

Poop!

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.

THE TALK

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."  

Ugh.

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."  

Ugh.

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. 

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!!!

Sunday Update

The view from our room 

Ellie continues to improve in her post op recovery.  She is more awake and alert today than yesterday which is good.  She lost one peripheral IV late last night so she has a free hand which is both good and bad.  Good that she can use the hand but bad that she can use it to pull on her NG tube.  Abby told me that she and Ellie have an undertanding about the tube.  So far she isn't pulling on it or complaining about it so we will see.

Her surgical dressing got changed this morning and the NP took out the drain tube which was remarkably similar to a red coffee stirrer.  Ellie has her old North-South suture line and a new one where the ostomy used to be. 

Things are good and the 12 tubes and lines are starting to be pared down.  we are down to 8.  We will not lose too many more until we get off the epidural. (Abby takes over writing now)

Ellie got to experience something new last night, bladder spasms.  A mom who had the room next to ours for a long time on 8west, came to visit last night.  She has a great blog and a very strong and tuff little girl. Their blog is called, From the Banks of Jordan.   She had to leave last night when Ellie's first bladder spasm hit.  It happened because Ellie's bladder was not able to empty enough because the Foley catheter wasn't draining correctly.    It was not pretty and not fun.  

We moved some stuff around and  got a better set up for her Foley but it happened again in the middle of the night and again as soon as Gib got here this morning.  But I think we have things under control now.  She was also very itchy and restless last night, which didn't meant we didn't get much sleep.  We had long talks about what all the numbers on the vitals monitor mean and which line coming off of her does what, what shapes you can find in the celing and long renditions of all the princess stories that I could remember.  

Finally, this morning I think we got the true perfect mix of meds and the itch is gone.  I know this becasue she looked at me at 9am and said, "mommy my face not itch any more!"  She watched a few movies, played with a new flashlight from her grandma in Maine and now is taking a good nap.  

It was good to see smiling Ellie today.  Also Dr. Jennings stopped by during rounds and she still in managed to give him an IV handed high 5 and flirt.  Go Ellie Go.  

Thanks for all your support and words of encouragement, you don't know how much they help.

Sleepy, itchy and a new NG tube

Ellie did very well last night and the epidural is working great.  She did so well that Gib was able to go home late last night. 

She did get a little restless around midnight and decided that she didn’t like having a tube up her nose.   

So she pulled it out.  

First she pulled off the protective hand sleeve that keeps her from grabbing things and then she grabbed hold and pulled the NG (naso gastric) tube out.  All in about 20 seconds.  So that bought her a new tube, and some valium.  She did a great job dealing with the new tube being put in and it is working even better at draining her stomach contents then the first one did.

The Valium helped her relax and get some real sleep.  After she pulled out the NG I got in bed with her.  It was not the most restful sleep for me. Since I was there to protect the 2^nd NG, I woke up every time she moved.  We did put large socks over the protective cuffs over her hands to make it harder for her to get the tube.   But this doesn’t mean she doesn’t try every few minutes. 

 Luckily she only needs this tube for another day or two 'til her stomach wakes up and starts doing it's thing.

There is a narcotic in her epidural that makes her face itch.  We knew this was going to happen as it has happened every time she gets an epidural.  But the first round of meds was not strong enough and so around 1am we got a narcan drip.  This is the same med they used on her after her second surgery to reverse the morphine, when she was just over a 1 month old.  Back in the NICU, You don't know how Lucky you are.  Just in a much smaller amount dripped in over a long period of time.  

The combo of the two meds seems to have made her much more comfortable.  She has been alternating between watching Kipper, sleeping and asking about the restaurant here at the hospital.  She loves any and all restaurants and that includes the cafeteria here at the hospital.   

Sadly she will probably not be able to eat for a few more days as we wait for her intestines to wake up.

All in all she looks good and keeps telling us that she has no pain, which makes Gib and I very happy.  

Her goal for today is to sit up and breathe deeply.  This will help clear all the crud out of her lungs and stop her from getting pneumonia.   

My goal is to learn more about Jon and Kate plus 8 and how insane they really are.  

Post-op report

She’s out and among our friends on the 10th floor.

 At 3:00 on the nose Dr. Jennings came to give us the post-op report.  Exactly four hours from the update that they were beginning.  Wow this guy is good. 

Everything went quite well.  Her ostomy is gone, he was able to ‘save’ almost all of the small bowel that made her ostomy and has reconnected it to her colon.  To minimize the invasion of the surgery, he didn’t measure anything but once again told us that she has ‘a fair amount of bowel with good motility.

The connection (anastomosis for you short bowel geeks) is good and he laid all of her bowel in nice, gentle loops in her abdomen to reduce the chances of kinks forming. 

Her liver continues to look pink and a tiny bit firm.  He also noted that the biopsy needle had a bit of resistance which may be an indication that fibrosis is still there.  That isn’t ideal but it is very close to the report from her last biopsy which indicated that no further damage happened as a result of her time on Omegaven.  We will wait for the formal report from pathology to see what the final verdict is because the proof in the tissue.  We’re sure Dr. Puder will give us a full analysis of what the means as soon as we get the report.

She has a drain in her old ostomy site to let fluid out and reduce infection but other than that, we are ostomy-free.

 She is very sleepy by design to let her sleep off the first night but she wakes up every now and then and asks for something familar so she is doing well.

 The new game of Short Gut hokey pokey begins now.  We don’t know the rules but will learn them as we go.

She's in

Ellie woke up this morning and told us very clearly that 'I am very excited to go to the hospital today!'

After a the normal amount of waiting room time when she told every doctor nurse and staff person that she was losing her ostomy today, at 9:30 this morning Abby finally carried her into the OR and watched her ride the versed wave to sleep.

And away we go.

Dr. Jennings told us that it may be a 'normal long time', or a 'more than normal long time', depending on what he finds when he opens things up.  If there is a lot of scar tissue or adhesions from the last surgeries, it may take a while to clean things up.  

We'll leave it to him and our favorite anesthesiologist.  

Yes we have a favorite anesthesiologist.

Ellie has had him three times now and we ask for him by name.  He is great with us, with her and Dr. Jennings told us this morning that we are right and he likes having this guy on the team.

Waiting rooms suck and always will.  Now it is nothing but waiting and we can't do a thing to help (as much as Abby would like to) so we have taken off and will avoid the waiting room until the phone rings.  

If only I could find a bed for a nap.

Why does Point Break keep popping into my head?

There is a fine 1991 movie called Point Break.  In this movie a young FBI agent goes skydiving with a bunch of bank robbing surfers.

Just as they are about to jump, one unnamed surfer looks at said FBI agent and says, "You're about to jump out a perfectly good airplane Jonny, how do you feel about that?"

I woke up this morning with that thought in my head.  We are on a perfectly good airplane right now.  Ellie is happy, growing and wonderful. We have a great nurse and things are going well.

So why jump?  

Well, I guess it is all about perspective and where we want to be.  Ellie with an ostomy is wonderful, but she is also a kid with a central line which is a huge risk and a kid who needs lots of IV fluids each week to keep her happy.  Jumping likely gets us a girl who can potentially hydrate herself and one step closer to removing the central line reducing that risk.

Besides, if you know our surgeon, you'd jump too.

So off we go to Children's in 5 minutes.

Geronimo!

Pre-Op Day

Tomorrow is going to be a very long day.  Today was training.

We had a 7AM pre-op appointment at Children’s.  That meant getting Ellie up and out of the house by 6:15.  Coffee for us and nada for Ellie who started her time of  Clear fluids only for the day and at midnight she goes to NPO(nothing per mouth).

All went well with the pre-op folks and we were shocked to see that Ellie is now up a full kilogram (2.2 pounds) since she went on pre-op TPN.  I guess if you have 900 calories of TPN, 750 calories of formula and three good meals each day that you can’t help but gain weight.  Shoot, I would gain weight on that diet. 

And gain she did.  We can feel the chunk in her thighs, which makes us all feel better as she goes into the mess.

We got home around lunch after telling three sets of people (surgery, anesthesia, and the Nurse Practitioner who works with Dr. Jennings) very similar things and getting a tear-free blood draw. 

We are very lucky that Dr. Jennings lets us do pre-op bowel at home prep instead of doing it in the hospital.  Insterad of being cooped up in a hospital room with a very perky girl, we let ellie ride her bikefor a walk during her bowel prep and played at Ellie's favorite playground.  

We are also lucky that Ellie’s prep is easy.  No food or formula (just Pedialyte) after 7 AM today.  Enemas until things are ‘clear’ tonight. Nothing in the g-tube after midnight. 

This sounds easy.  Until you try to give a very logical and opinionated three year old her fourth enema in an afternoon. 

No fun at all.

The plan tomorrow is for an 8:45 surgery.  That means we need to be at Children’s by 7:15 tomorrow morning.  Dr. Jennings has Ellie scheduled for four hours of surgery which, depending on whether this time includes prep and finish time could be as long as six hours from the pre-op room to the PACU (Post-Anesthesia Recovery Unit) recovery.

The plan of at attack:  Dr. Jennings will do a reconnection of her colon to her short bowel, clean up some scar tissue that will inevitably be clogging the works inside, and take a much-anticipated liver biopsy for the folks who are looking at the long-term effects of Omegaven. 

So we hope to have a fairly comfortable girl back to us by late afternoon but understand that things rarely go as planned.  If she is out of the PACU by dinner time we are doing well.

This is one of the rare times that Abby and I will both spend the night in the hospital since post-op nights are often action-packed and sleepless.  Fortunately we have friends and family who are coming over to take care of Gus.

You would think that after eight surgeries in three years this would get easier.  It does.  Until we start thinking about what it all means and what tomorrow afternoon could hold for us. 

Then it gets scary, even the ninth time around.

But on the upside, we probably are all done saying ‘How are your balls?’ to Ellie in crowded restaurants.

Gratuitous Photos

No message, just some good pictures to remind us what she looks like a week from now when things are all hinky.

The pre-surgery TPN is doing its thing and Ellie has put on a little more than a pound since we added a lot of calories last week.  This will give her a nice cushion for next week.

So we have that going for us.  

Which is nice.

Prepping for next week

This week we have been spending a lot of time getting Ellie and ourselves ready for next week's events.  The reality of what is going to happen is still quite abstract to all of us since Ellie's ostomy has been with us since she came home in 2006 (yes, ostomy bags have been part of our family since November, 2006!).  It has been a long time since Ellie has had surgery of any kind.  

The loss of the ostomy really hit home yesterday afternoon.  Somehow Abby and I got into a long conversation about our inventory of ostomy supplies.  I counted six sets.  Not a lot but I figured it would get us through.

"Six sets, eight days.  We should be all set."

Abby looked at me and said, "Okay, but we need to let Children's know that we need to bring some home with us afterward."

 I looked at her and waited.  I figured that it would dawn on her. 

After a long pause, I said, "Abby, we're not coming home with an ostomy."

"Oh wow.  I just hadn't thought about that."

The other side of the reality of going in next week came on today as we had Ellie's regular clinic appointment with the Children's Short Bowel Team.  The thought of being 'in' again with a post-op Ellie is tough to think about.  

But we did 8 months so a week or two shouldn't be all that hard.  Right?

The particulars from clinic:

• Ellie weighed in at just what she did in February.  ~14 kilos ( about 31 pounds) which puts her in the 50th percentile for 37 month old girls.  Not a big gain but,
• She grew about an inch and half since February.  which put her skinny self in the 75th percentile.  three quarters of 37 month old girls are shorter than Ellie.  Yahoo!
• We asked to go back on TPN for the  period around her surgery to give her a bit of a pre-and post-op cushion for the time that she doesn't eat around surgery.  She starts omegaven and TPN tomorrow for the coming week.  No big deal but she will get 50% more calories than standard D10 and we also get the benefits of all of those omega threes for her surgery.
• She is also starting her third course of cipro tomorrow for the pre-op period.  Having bad gut bugs is especially bad when you are operating on the bowel itself.  
• Abby won the badass parent award for her line repair skills.  'You did what?,' said one doctor. 'Wow.'
• And we got to meet a kid from Connecticut who had Ellie's original surgeon at Yale-New Haven, Dr. McKee.  The kid was at YNH and was referred to Children's for omegaven by Dr. McKee and the mom knew all about Ellie.  It is good to know that good doctors are aren't being vain and are doing the best thing for their kids and getting them omegaven.  If only all  doctors could do that.

We have a pre-op appointment next week for the administrative particulars but at this point next week we should be in the depths of an unpleasant night of home bowel prep (think roto-rooter and massive colonics) and then we are off to the big house.

I think we can.  I think we can.....

  

'Very Happy'

Those were the words from Dr. Jennings this week as he gave Abby the report from Ellie's upper GI.  No major changes from the last study and her 'transit time'- the time for the dye to move through her gut- looked good

Ah, those were the words I wanted to here.  

No reports of gross dilation, a second stomach (that's what it looked like in some of her early UGI studies), or a huge pocket of doom.  

Phew.  All systems go for surgery on the 29th.

Now we just have to deal with the fact that it is going to take a significant step backward to make progress with Ellie.  Thinking of our bubbly little girl all laid up in the hospital is terrifying but we understand that this is what it takes to move her forward so off we go.

So we are spending the next two weeks getting Ellie and ourselves prepared for what we figure will be a week or 10 days in the Inn.  We are lining up new things to entertain her and talking a lot about the hospital. 

Ellie told us in vivid detail about 'the nice nurses who like me' and the 'nice woman in the hallway who cleans her room'- two things that are in her head that we didn't tell her about.

Memory like an elephant.  Damned Omega-3's.  Thank you to Max, Kai and their folks for the great book, it will be nice to have new things to read when she is in.  Thank you.

The line repair is holding up nicely and we are past the 72 hour mark, phew!

Line Repair number 3

Third time is the time charm right?

So yesterday during Ellie's CVL dressing change I noticed something dark in the thin part of the catheter.   Then I gave it a squeeze and it was hard.  Ellie has two repairs to her line, one close to the skin and one that lives outside her dressing.  The only thing we could think is that it was the metal hose barb that slides into the old line during a repair.   Some how the metal piece had jarred loose and was moving down her line (closer to moving into her)  We had no idea that this could happen and when we called Dr. Jennings he said the same thing.  

The main concern was not the metal piece working its way into Ellie since there was another repair down stream that would have stopped it.  We were more concerned about 

1. How strong was that old repair without the metal piece?
2. How long did we have before that hard metal piece caused a break in the line?

So we knew we needed a repair.  Dr Jennings said he could do it this afternoon, but with the dry time the repair needs we would have had to push Ellie's night time infusion way back.  We have a repair kit here at home and I have done it before, so why not do it again?  OK, so the first time time I did it I had a world class transplant surgeon talking me though it.  But, I could do it by my self, right?  Right.

Oh, yeah and because a picture is worth a thousand words, how about video?  

What you are watching:

1. Ellie's old line lying on sterile drape
2. Abby Cutting central line to repair
3. New end of line attached to old line by sliding metal hose barb into old line, it comes already attached to the new line.
4. Clear tube slide over line and filled with Silicone to hold the line together.  
5. Oh yeah and all to the sounds of the movie Bugs Life that Ellie was watching.

We were right that it was the metal piece from the old repair and we are going to bring it in with us to our next clinic visit for show and tell.  All in all it went well, Ellie is now asleep with D10  running at her normal rate of 125ml/hr.   I only felt like barfing for a few hours after cutting her line, and I am feeling better and better the longer we go with no incident.  

This is the old line post repair.  It will soon be attached to one of Ellie's dolls.  This is not how we thought we would be spending our Tuesday morning.  I think we will all finally relax in 72 hours after the threat of infection has passed.   

Upper GI

Yesterday was a scheduled trip to Children's for us with Ellie. Before her surgery later this month Dr. Jennings would like to know what we are looking at and also have a baseline against which we can compare any post-op changes.

To do this it meant another contrast upper GI study with our friendly radiologists (who somehow remember her).

As a very aware three-year old, Ellie is getting more keyed in on what is going on than she has been in the past. She knows what the hospital is and what happens there, and who and what we see when we are there. For the most part she is positive and excited about going to the hospital. She tells us about the big soft bed, the buttons that makes the bed go up and down, and the table that comes across her bed. When I tell her stories at bedtime about her favorite fictional creatures, Fish and Octopus, and their trips to the hospital, the stories do very little to put her to sleep since she stops the story when we forget a tiny detail of what we see as we walk through the hospital (No, daddy, after the cod, we see the bubble wall, and then the elevator...)

As we ate dinner Tuesday night we started talking about Wednesday's trip to the hospital and going in for pictures of her belly. For the first time there was some anxiety. we didn't know what to do since most of the time she runs into the lobby and is happy to be there.

On the fly we started telling Ellie about what the upper GI was, that it wouldn't hurt and that it was just a very fancy camera to take pictures of her belly. Abby then suggested that she could bring a camera and take pictures of them as well.

Problem solved. Phew.

So we went in and had the normal UGI happy as can be: An initial belly film, load of barium chalk through the g-tube(another good use for a g-tube), more pictures and some manipulation: a lot of waiting, lots more pictures (even Arnold the Piglet got films taken) and we were out the door five hours later.

No tear, no arguments. One free ballon for super girl.

So no we wait to hear from Dr. Jennings about the results with a bit of dread since the radiologist did use the word 'dilated' when he was looking at her films:
We are crossing our fingers about this and hoping for the best with an undersatanding that the radiologist likely didn't have much experience looking at Ellie's unique plumbing and Abby had to draw a diagram for him to explain what was where, how it was connected and how it works.

On the upside, now that the UGI is done, we are on the cancellation list and can move her surgery up if there is an opening in the next few weeks. Fortunately things at This Old House are slowing down and we are down to one final carpenter so a stay at the Inn could really work if the opening happens.

We figure the sooner we get her in, the sooner the recovery starts and the sonner summer starts. We have plans to go to the Oley Foundation Conference in Florida in the end of June and are going to do everything we can to keep those plans.

Ellie needs to know other kids with tubes and there is a great community of families at Oley to get to know.

Hello Cipro, my old friend

After a few days of still feeling lousy and Ellie's fever still cranking along at 101, we finally made a call to Children's yesterday to see if they wanted to see her, change plans or let things roll. After a long talk with Dr. Jennings we agreed that since all of her blood work and cultures looked good, that it might be a GI bug again that needs antibiotics to treat Short Bowel Bacterial Overgrowth, SBBO, or a carpet of bugs that are growing on the insides of her small bowel, a relatvely common thing for short gut kids especially for those without their ileo-cecal valve to keep the bugs in their respective places.

We know that Cipro worked in the past and thanks to our friendly compounding pharmacy we were able to start it in the very special EB (Ellie Brogan) formulation last night.

The results so far have been amazing. No more fever, decreased ostomy output and a much happier kid after one night and a seeminly normal kid by this afternnon. Amazing.

We are going to tiptoe back into feeding her but all signs so far are that she is very hungry and ready to pick up where she left off a few days ago. We'll weigh in tomorrow morning to see if she slid back on weight and by how much.

Hopefully we caught it without much loss this time.

Today's fun was decorate your own donut day at Dunkin' Donuts. Ellie decorated well but had no interest in the donuts themselves.For her it was all about the sprinkles which she tried to drink out of the little dish before we caught her and scaled things back.

Mmmm sprinkles.

Still churning away

Ellie continues to show signs of some mysterious illness. Her fever continues to ride around 101, and her output into her ostomy has been increasing over the last few days to what is called dumping, a nasty little situation where more comes out than goes in which makes her continually in a hydration debt that we are struggling to keep up with trough her evening D10 infusion and her naptime top-off of D5. The thing that is the most alarming to us is that for the first time she is acting and looking like she is sick. Pale, sunken eyes and low energy are all things that are new to us.

After 72 hours of this we have made a call to Children's and it won't surprise me to be heading in sometime today. So we are watching lots of Blues Clues, changing a lot of ostomy bags and quietly getting our things together for a trip to Boston if we need to go sometime today.

Oh well. At least it isn't Barney...

So far so good.

She's home. Dr. Jennings sent us home to wait for the first round of labs. And we just got the call that everything looks good so far. She also sneezed a few minutes ago and a bunch of boogers came out. I have never been so excited to see snot.

I'm not happy that she will now have to deal with a bad cold, but at least all signs are pointing away from it being a line infection (knock on wood now please.)

So now she is off to my sister's house to have lunch and take a nap so that Gib and I can do some serious demo to our house. :)

102.0 F

Here we go again.

Ellie coughed a few times last night but other than that she has been fine. She got in bed with me this morning and I noticed that she felt like a small furnace. I checked her temp. and got 102.0. So Gib, Ellie and Karlene are on their way to Children's to see Dr. Jennings. They will get labs drawn and blood cultures started, then stick around for the white cell count and CRP.

We still have a ton of stuff going on at the house and about 7 workers here, so some one needed to stay. So here I am. We are hoping that is it just a cold and that she will be home by nap time today. But I did pack them an overnight bag just to be on the safe side.

So keep your fingers crossed for low CRP and normal white cell count. On the good side, Ellie is still her normal self. She danced her way to the car this morning and was very excited to go see Dr. Jennings.

News for the week

Last weekend was very busy for us. On Saturday we had a houseful for a third birthday party:

Mmm, Short ut friendly cupcakes and frosting....

and Easter:Egg hunts are always fun.

Super Ellie to the Rescue. On Easter...

To cap it all off Ellie had her three-year check up with her pediatrician. Although would like her to be growing and adding weight faster than she is, her size places her squarely in the middle of the pack for her age, 75th percentile for height and 5oth percentile for weight- long and thin. This a good news for us but also really great news considering where we have come from and the prognosis that we got on day zero. We thought about sending a note to her very first surgeon at Yale-New Haven but decided against it since they weren't so keen on out transferring to Children's.

To think what things would be like it we had not transferred....

The other news for the week is that we have a tentative date for Ellie' s next surgery, May 29th. The plan is to reconnect her bowel at this time and redirect the almost all of her bowel flow to her colon which will help her hydrate herself and ultimate reduce her dependence on her central line. Since we are all for tip-toeing through the process the plan also includes installing a surgical vent in her bowel to release gas and other pressure that might build up in the absence of an ostomy. She will be left with a much smaller stoma in her bowel that is controlled with what was described to us as a tiny version of her g-tube button that allows access to her bowel but can be closed. My Google search leads me to believe that we are looking at what is called a 'Chait tube'. But I could be wrong. Ellie has an in-person appointment late this week and we will know all of the details then.

The other huge news from the last few weeks has been the incredible transformation of our little house into a not-so-little house. We are still living in This Old House, but we can see the light at the end of the tunnel. Amazingly, we have only had to spend 2 nights away during the whole thing.

Here is what we started with. Two bedrooms, two bathrooms a lovely yellow color from the 70's:

Here is a few days later. Four bedrooms, three bathrooms and an upstairs on its way to being gray with real windows:

Things are still dusty and loud but we are getting there under the expert eye of Abby the General Contractor who is keeping everything organized and in line. This is another career that she could take on after Curator, doctor, nurse, and general badass.

But you can understand why blog posts haven't happened in the last few weeks.

I have to say that we are much better off with Abby at the reins than me. I think we would be living in a tiny house for decades if I were in charge. Ellie thinks all of the construction is great fun especially the trucks that deliver everything.

Her mother's daughter.

Ellie's Birthday!!

Showing off the new bike
And she's off! She just got on and took off.
We quickly realized we will need another bike for us to ride to keep up with her.Ellie and Arnold the Pig

Happy Birthday Ellie!!

Ellie is 3 years old today!!!!

Her first birthday we stayed at home and didn't really talk to anyone about the event. Just us and a cake, that Ellie hated. We were told so many times that she might not make it to her first birthday, so when it happened I think we were afraid to make too big of a deal of it. Also, we were convinced that if we threw a party then she would be admitted and we would have to cancel.

Second birthday was a very small event just us and a cake, that she again hated. We went to my sisters for dinner the next night for a small celebration with family.

So this year rolls around and we decided to bite the bullet and throw her a party this Saturday. She is very excited and keeps talking about who will be there and that she wants cupcakes. I think she has talked more her cousin and family that are coming down, than she has about her actual birthday. Hopefully the weather will be nice, if not our house will be ready. Well... parts will be ready and other parts will be up for tours. We will see if she likes the cake we give her tomorrow or the cupcakes on Saturday.

Here are some fun Ellie tidbits for you:

• When asked what she wanted for her birthday she said, "A baby sister."
• She can sing along with The Wiggles and do all the same dance moves the wiggles do, while jumping on her trampoline. (She did not get this talent from her parents.)
• She has been hiding anything roundish in size everywhere around our house and my sister's house saying that she is the Easter Bunny. Then she says she is Ellie and goes around and finds all the "eggs." Think she is excited for the hunt?
• "Cool" is one of her new favorite words.
• Lastly, she is getting a bike for her birthday, so stay tuned for pictures of Ellie on her new bike!

Happy Birthday Ellie!!!!

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!!!!

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?

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.

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.