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.

Gut bugs with attitude

In December Ellie's ostomy started to misbehave. A misbehaving ostomy dumps fluid and is a real hassle for us since we have to watch her hydration and supplement fluids to keep her from going dry. It is also a hassle because dumping food gives the food less time in her gut to be absorbed and slows her growth.

If my Mom and Dad ever forget my plumbing, now I have a t-shirt with a diagram...

We had lots of theories on why she was dumping. A food that disagreed with her. A physical 'plumbing' issue that was caused by the catheters in her manometry study. Too much formula. Too little formula. Gut bugs. You name it we thought about it as the cause of the trouble as we watched her dump more fluid than a full grown adult should each day.

After a few weeks we talked to her doctors and tried to manipulate things to make her stop dumping fluid. Some things worked for a day or two but there was always a HUGE day at the end of the good days that set us back.

Finally we flew against our assumption that her ostomy was protecting her from an over growth of a carpet of bad intestinal bugs called small bowel bacterial overgrowth (SBBO, for those that did acronyms like I do) and we started her on Flagyl, the standard antibiotic for over growth. Since her version of short bowel left her without the valve that keeps the good short bowel bugs and the bad large bowel bugs in their appropriate places (the ileo-cecal valve or ICV), the bugs sometimes migrate to be where they shouldn't be. Snaking a couple of catheters in there in December may have helped things find new homes as well.

A week of flagyl and nothing had changed. Flagyl just didn't touch them which made us a bit anxious that we wouldn't be able to find the cause and that she may just dump a lot for a while.

Not fun or really good for her.

Then last week her doctors pulled out the big guns and started her on a course of Cipro. Yes, the same stuff that they give to anthrax victims. Heavy-duty drugs.

Voila! Presto-change-o, things dried up over the weekend.

It seems that Ellie may have had some super-powered bugs in her gut and just needed the heavy artillery to fight the fight for her.

Or we could be entirely off the mark and it was just the water in Maine this weekend.

No matter the change that brought it about, things are on the upswing and we hope to get moving forward again sometime soon.

If you are curious, here is the detail of her t-shirt, made for her by a very talented artist friend of ours in Vermont:

Technical Difficulties

We're not sure why things are/were blank but we are working on it.

Treading water...

More of the same this week.

Lots of unclear action from Ellie's ostomy with up days and then down days. We are taking the lithium approach to these-riding neither the highs nor the lows but watching our girl be happy in the middle of these waves. She just doesn't seem to notice what her numbers are doing. Which is nice but underscores the need to watch all of this very closely.
We have been in touch with her doctors at Childrens and everyone is watching her these days and thinking of physical, chemical and biological reasons that things are going screwy. We are going to try a course of a new antibiotic this week and see where it goes.

If things stay this way we may need to check her in for a few days to go NPO (stop feeding her) and let her pipes clear out. That would likely mean another round of TPN but after two months off we aren't so concerned about that for a few days.

We have never been so glad that we count everything as we have been in the last few weeks. Having 'the numbers' makes everything a bit more controlled, gives us an idea of how things are going, and tells us when we might need to call an audible and change course.

we are off to Maine to visit my parents and fmaily for a few days in the morning. Maybe what her bowel needs is a change of scenery or a dose of Aunt Beth fawning over her...

cha cha cha cha chaaaaaa Cha!

So we are better? We went to clinic last week and she weighed in at 14.2 kilos. That is down from 14.28 two months before. Needless to say they were not ecstatic. They gave us a month to get her gaining weight again. They also agreed that the stinky high output is probably due to bacterial overgrowth. So we did a week of the antibiotic Flagyl. We are now taking a week off and will do two more rounds of one week on, one week off.

We are also looking into a different vitamin, because we were able to tie a few of the high out put days directly to her vitamin. So we are looking into tablets or chewables.

I hate that we had to use Flagyl, I hate messing with the flora of her bowels. But it had to be done. So now that we messing with it, we are going to look at and start pre and probiotics. Thank you everyone that sent info about what you use. It gave us some good info to start with. Why re-invent the wheel, right?

Ellie is just like she always is.... a wild woman.

We on the other had are getting a bit tired of the "short gut cha-cha" and are ready to stop dancing for awhile. It seems like we have a good day followed by a bad day, and repeat. But amazingly today is day our first of 2 good days in a row. So we are hopeful. Good days usually mean weight gain and that is a good thing.

Other than the output thing we are all doing well. Ellie loves ballet/tap and Gynastics are fun and scary with the wild woman. As you saw in the previous post, Ellie is into story telling. She will tell us whole scenes from Shrek and almost all of Green Eggs and Ham.

Hey Max! Try this one!

We had a bit of an eye opener today. Ellie started telling me about the "special doctor". I asked for clarification as to who and what the special doctor was. She explained that at the "special doctor" she gets a big white bed that goes up and down, that there is a big TV on the wall and there is also a brown table that goes over the bed that we put her train set on. Yeah, that would be the hosptial that she is talking about.

After I picked my jaw up off the floor I asked her if she liked the "special doctor", and she replied, "Yes it is very fun!" That took a little of the sting out of the fact that our "she won't remember this" time is over.

Mrs Wishy Washy

A little bedtime story:

OMG did I cut them off???

Her curls that is. About two weeks ago I decided that it was time to give Ellie's curls their first real trim. The curls were getting tangled all the time and they were getting stuck in the zipper of her backpack too, and that was not fun for any of us. So we gave her a sink bath, washed her hair and then I got started with the cutting. Now her hair doesn't get stuck in her backpack, is much easier to brush and wash and doesn't look as ratty. But the perfect ringlets are GONE!!! I always loved how her hair made perfect Shirley Temple curls that looked like I had spent hours perfecting, when in reality I did nothing. Oh well, hopefully they will come back in the humid weather this summer. Hopefully.

So back to a more serious topic, Ellie. She is still not gaining weight. She is basically stuck at 14 kilos. We think she has gotten taller and we know her shoe size is bigger, but the weight gain is not happening. We are also battling high output from her ostomy. Usually I can pin point the culprit when she has high output, (pork marinated in brown sugar and orange juice, Mac and cheese, too much Popsicle, beef with too much spice) but this time we are at a loss.

After her study she was pooping in her diaper 8-10 times a day . Sounds like normal short gut right? But we did the study because she wasn't pooping! Her ostomy output during this time was fantastic. It was around 300mls a day and her urine production was great too. Then she went back to her normal of pooping 2x a day but only with a suppository. And her output went up to 1000 a day. Not great.

We have been managing her hydration with extra D5 during her naps. Then we have been tracking everything she eats and looking for a reason. She also started oral vitamins right after her study, so we have been looking at those. Now we are mixing them into her milk bag at night so that she gets them over a slower period of time. But we are still seeing high output.

The next thing we are looking at is bacterial overgrowth. We haven't seen this since before her ostomy was created but, it is very common in the short gut world, so we knew it would come back. Her breath stinks and her output has taken on a almost yellow orange color, we think these might be due to bacterial overgrowth.

If we can get her output under control then I'm sure she will start gaining again. I'm ready for her cloths to look like they fit again.

Other than the high output and looking skinny she is doing great. She started gymnastics, ballet and Tap classes last week. Gymnastics are her wild time and she is amazing in ballet class.

We are spending today snowed in and very bummed that we didn't get to go to CT for K8's birthday party. But we did have fun playing in the 10 inches of snow that was supposed to be 1-3 inches. The sight of a snow angel with a enteral back pack impression in the middle is fantastic.

OMEGAVEN!! Welcome

With the article on the front page of the Globe last Friday we have a bunch of new readers. We went from having around 150-200 visits a day to over 900. So we decided to do an quick post to catch everyone up to date. I have linked key words in this post so if you don't know what something is, just click on it.

Ellie before the Omegaven

Ellie was born in with Jejunal Atresia, this left her with 30cm of grossly dilated small bowel coming down from her stomach that ended in a dead end, and then 70% of her colon, that was very small from disuse, coming up from below also ending in a dead end. What happened is that at about 10 weeks into gestation the bowel either got twisted or there was a blood clot, and the bowel lost blood supply and died. It was then reabsorbed into the body. We have been told by the geneticist at CHB that this was a just bad luck and not associated with any genetic disorder.

Ellie post Omegaven

She is was at Children's Hospital Boston for 8 months and now is doing very well. We have been back multiple times since then but not enough to get the name "frequent fliers." She was on Total Parental Nutrition (TPN) and Omegaven for IV nutrition through a central IV line in her chest for the first 32 months of her life. But as of December 1st, 2008 we were able to stop both with the hope that she would be able to sustain her needs from the small amount of bowl that she does have.
She eats 3 meals a day, and the only thing she drinks in Elecare formula. She also is on tube feeds 16 hours a day. This is what the is in the backpack that she wears. The backpack holds a pump and a bag of formula that is pumped into her belly 16 hours a day. Your intestine adapts as it has contact with food, so if it always has contact with food, then it is always adapting. And adaptation is the only way her bowel is going to be able to do the job that a normal child's would.
Ellie had very dilated small bowel that resulted in inability to tolerate food, bacterial overgrowth and a few line infections. So in November 2006 we opted to create an ostomy at the end of her small bowel to allow the back up of food to have a place to go, while keeping the colon attached. This has worked very well and we have seen little to no bacterial overgrowth since. And (knock on wood) no line infections. Click here to see a map of her bowel layout.
We are hoping that sometime this year we will be able to reconnect her bowels and remove the ostomy. Then she will have a central IV line for a short time and a G-tube for as long as she needs it.

If you are looking for information about short bowel syndrome or short gut, a very good site is the Short Gut Wiki, it was created by short gut parents and patients for anyone with short gut.

If you are looking for more info on Omegaven please look at the Short Bowel Wiki for more information. There are some great stories of some amazing kids on that site. Also you can contact Children's Hospital Boston to learn more about their Omegaven program. The lead surgeon for the program is Dr. Mark Puder he works along with pharmacist Kathy Gura to run the program.
We have met many amazing families through this blog. Please look at the column to the right to visit their blogs, get more info on short gut and our doctors. We also love to meet new short gut families, please feel free to email us (look in column to the right).


We can not say enough about Omegaven, or Dr. Puder, pharmacist Kathy Gura and Ellie's surgeon Dr. Russell Jennings. We give credit to all four for saving our daughter's life. She is an amazing child and we can't wait to see what she will do next.

Front Page!

Surprise, surprise, today's Globe has Ellie on the front page.

http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/

The front page:

The web video:





Thanks, Adam for putting this one in motion.

Maybe she is just getting longer

We are back from Maine and happy to be on home turf again. Traveling is much easier than it used to be but the home court advantage is always a good thing and not live out of a bag and a box of medical supplies.

It was great to see everyone and let Ellie play with her cousins, try skating on very big borrowed skates and go sledding again on a nice toddler sized hill.

See if you can spot the 'Oh, shit' moment in this video when I realized that I might have just flung my daughter into the woods....

'Daddy, do it again!'

We had a big relief Monday morning when we finally got home to the scale and had an Ellie weigh-in. Today she weighed in 14.18 kg (31.2 lbs) , more or less exactly what she was the day after Christmas and within a few grams of where she was when she went in for her study a few weeks ago and where she was when she came off TPN a little over a month ago. We were sure with the way that her pants were falling down around her ankles that she was shedding weight but apparently it is still there. Maybe just rearranged itself. Or maybe her body is following along with the growth of her feet and stretching out on a daily basis. But considering the current cold, the very active month that we have had and the other mysterious ills of her ut, holding her weight is a great thing.

So no call to Childrens to talk about getting on the TPN train again. The case of omegaven is in the cupboard but we'd rather leave it there if we can.

Speaking of which, we spent about 5 hours with folks from the Boston Globe Monday telling them the condensed version of the Ellie story and giving them a crash course on short gut, TPN and all things medical around here. It looks like they think the omegaven story is as great as we do and are working on a way to get it into the paper around here again.

we'll post a link if it runs.

Back to my favorite chair for some quality time while Ellie catches up on her sleep after four very busy weeks.