No news is good news

I guess that we have fallen into the pattern where a lot of people discontinue blogs. If you have gotten into the groove and don't have a lot going on that is news worthy, there really isn't much to write about which is the whole point of a blog. It is very tough to motivate yourself to write that all is well over and over again even though I know that my mom likes to read it and see the pictures. I guess that makes us very fortunate that we don't have a lot of news and that Ellie is doing so well especially when you consider some of the kids that we know and their seemingly endless struggles.

The other thing that makes it tough is that it is Spring and we are outside a lot these days playing with Ellie on her swingset:

We are also teaching her to grow tomatoes, that she calls her 'babies':
Sitting down to write just isn't up there on the to-do list.

I promise that if something funny or important happens that it will go up here.

Now the update:

Ellie is continuing to learn how to eat and chew like a big girl in addition to her Elecare that she guzzles. She does very well with traditional pureed baby food and soft things like avocados but has needed some help to move on to things that are crunchy or need chewing. She would prefer to gum things with her tongue and swallow them whole, but that isn't very good for her digestion not to mention being unsafe. So we help her chew and demonstrate a lot of chewing in not so polite ways. she is getting the hang of it and is very proud to crunch and chew things for us. Our Occupational Therapist came earlier this week and had some great tricks and tips for us to help us along. In the big picture we have advanced Ellie's tube feeds to give her 56 percent of her calories from her tube and 44 percent from her TPN. If you throw in the three meals plus snacks every day we are closer to 75/25 split which is just great. With her ostomy still in place we can't advance much beyond this because of her need for fluids but we will see about some changes in the interim that will keep her moving in the right direction until we reconnect her.

We are in no hurry these days to reconnect her but want to keep moving things forward. Her ostomy output has been behaving lately which is good and keeps her away from needing extra fluids during naptime. Curiously she still won't poop for us without the stimulation of a glycerin suppository but when she gets glycerin, she poops very well for us. Nobody is quite sure what to make of this but hopefully we will know more in a few weeks when she has a endoscopy and motility study done at Children's. There is something not making sense and a look around might tell us why things aren't going so well. A good sign is that when she does poop it is of good consistency which makes us believe that her colon is doing its job of absorbing water. This makes us hopeful that she may not have the chronic diarrhea that is very common with short gut kids.

The most fun for us over the last few weeks has been Ellie's transition from sign language to verbal speech, a rapid switch that gives us head scratching moments every day. A month ago her Early Intervention specialists had some concerns about her language and brought a speech pathologist with them earlier this week. Just like when symptoms disappear when you go to the doctor with an ache, Ellie kicked it up a notch and stated speaking a week ahead of the specialist's visit. As Ellie played with them I watched the speech pathologist write every word Ellie said. Mom, Dad, Kar(lene), eat, noodle, ball, Gus, Book, and on and on it went. we felt a bit silly to have her there but the EI specialists told us that they were amazed with the change in a month and that they felt better after seeing the Ellie show. They will keep coming back each month to check on her but for now they are very happy with her and keep telling us that she is at or advanced for her age, developmentally.
Music to a dad's ears.

So on we go, in the groove and having fun.
More news and pictures soon.

Here's hoping that we don't have any newsworthy items anytime soon.

Oh, yeah, no rubber plug yet, but we keep looking for it. If it is in there it must be like the rocks that are in sheep bellies, bezoars, I think they are called.

I'll call professor Snape if I find it.

Happy Birthday Mom

Ellie's language is coming along and between her Ellie sign and her ever-expanding set of new words and noises she manages to get her point across very well these days.

Her favorite thing to say these days is 'big poop' (*whether it is true or not) along with her favorite game of going through the alphabet and telling us an animal that begins with each letter either with a word like Hippo, or a sign like alligator. No kidding, she is good for almost every consonant on a few of the vowels.

Today is Abby's birthday. Ellie met her mom this morning with the art project that she and Karlene did together and told her mom 'Hop pee', which made Abby's day.

Hearing something else than 'big poop' was a nice break.

The highlight of the day was our new swing set that Ellie's grandparents got her for her birthday, more or less.

My grandmother got us one when I was little and my mom really wanted Ellie to have one as well. Even though it was raining and gross this afternoon, we brought Ellie out to see it and it was all we could do to get her back in for dinner with a wet bum and soaking hair.

Something makes me think that Ellie will be a permanent fixture on her swings this summer.

A long awaited play date

We finally had a play date with Christian and his folks. They were up for their 3 month check up and were able to squeeze us in before heading back home.

Christian looks great and it took a while but both kids were finally ready to play with each other just about the time they had to go home. That also could be because it had been a over a year since they had seen each other.

Check out Christian the flirt

It was especially nice to have some time to pick Colleen and Bill's brains on their feeding secrets. Christian weaned off of the pump onto primarily solid foods, very impressive. With Ellie's age, this might be something we are looking at.
It was fun and hopefully we will get to see them when they come up again later this summer.
Thanks Bill for the great pictures!

A long overdue Update

Not a whole lot of news to report over the last week or so, which is just great by me.

No rubber thing yet. We keep looking and hoping but it hasn't emerged. On the upside, we haven't really seen any ill effects of it either. This has led us to doubt if she actually ate it or not, but her pantomime of the swallowing was so convincing that we think it certainly may have happened.

We will likely know for sure on May 26 when the endoscope goes through her and has a look around. Up from the bottom, down from the top and in from the ostomy, they are going to have a look and try to figure out why things keep going out her ostomy even after the revision in January. They are also going to do a colon test over 24 hours to see how well her bowel contracts. This won't be much fun since Ellie will need to be in her crib for 24 hours but with Barney, Kipper, and Maisy we think that Ellie would sit still for ever if we just hit repeat on the magic DVD machine.

Ooooh moving colors....

We are working to get Ellie's feeds increased and are up to about 800 ml of Elecare each day along with three good meals. By our math, this puts her well past the halfway point of food to TPN.

She is growing well and that is a great sign.

Spring is here and I will try to get more pictures of our little girl out and about with her flowers.

As always, no news is good news.

Um, where did the rubber thing go?

One of Ellie's favorite games for the last month or so has been to help Abby and I with her central line flushes by taking the empty saline syringe and playing with it while we finish hooking her up. She has gotten very good at taking the plunger out, popping off the rubber end in her mouth and spitting it out before she puts the tip-less plunger back in the syringe. Without fail she does her trick and is very happy to play with it while we needed her to be still. Since Ellie doesn't swallow all that much we knew that she would keep spitting out the rubber piece.....

You can probably guess where I am going with this.

We were hooking Ellie up just like we do every night. Flush into the central line, give the flush to Ellie to play with, wipe cap with alcohol, hook up the TPN. Except when it was all done, the rubber piece off of the empty flush was nowhere to be found.

We asked Ellie where the rubber piece was and clear as could be, Ellie pointed to her mouth.

We sat her up and asked again where the rubber piece was. Ellie the pantomimed swallowing and showed us her empty mouth, proud as could be.

It was bound to happen sooner or later. We have been letting Ellie play with the saline flushes after hearing that another family did it. But, for some reason Ellie chose tonight to swallow the piece.

Let's hear it for having a surgeon who is accessible and happy to talk. At 8:45 I called Dr. Jennings at home and told him what had happened. Yes, home with kids running wild in the background and everything he stopped and answered my questions.

Instead of rushing into Children's for 26 tests and an endoscope, which I am sure the on-call resident would have us do, Dr. Jennings asked a couple of questions and told us not to worry.

'It will pass, one way or another. Those things are soft and not very big. Just watch her and watch for the piece. All those tests won't help and might make things worse, anyway.'


Needless to say we will be taking off the rubber piece from now on before giving Ellie the syringe.

Let the ostomy/poop watching begin.

Hopefully we will see a well-traveled rubber disc sometime soon-either out the ostomy or down below.

Buh, Buh?

Ellie has been spectacular this weekend while Abby has been away. Always smiling, never grumpy and sleeping 11 or 12 hours each night. Maybe the biggest miracle of all is that she never got sad that her Mom wasn't here. This makes me a little bit sad but also glad that Abby and I work from home and see Ellie all day, every day. When one of us is gone it isn't such a big deal, she just gets more time with the other one.

This morning she woke up giggling in her crib and whn en I went to ask her if she wanted to get up she told me:

"Up, up. Buh, Buh?," and started giggling in her crib again. She wanted to get up and play with Beth.

This made me realize that maybe it was Ellie just being great this weekend because she was excited and exhausted from playing with her aunt.

Either way she was a rock star.

Abby changed her flight and should be home after lunchtime. Karlene is back today as well after three weeks of rehabilitation after spinal surgery.

Not a minute too soon on either front. Ellie has some serious playing to do and I'm not sure that I can keep up with her.

Dance Party

My sister keeps telling me that she never sees the fun stuff so here is a video of our after dinner dance party.

Just another fun night:

Flying (almost) solo

Abby recovered nicely since her purge on Tuesday night. Apparently it was something that she ate and it went by in 24 hours. Phew. Gastroenteritis isn't something we want going around here.

This was good for Abby since she was scheduled to fly to Colorado today to surprise her mother on her mom's 70th birthday. Both American airlines and her stomach tried to screw it up but in the end Abby left before dawn this morning and is the furthest that she has ever been from Ellie, 7 1/2 hours if the flights cooperate.

This is good thing for both of us, I guess. Abby gets to stretch her legs and be away for a little while and I get to fly solo for more than an overnight for the very first time. Okay in all honesty solo is a relative term since my sister came down from Maine today to help, but as far as the serious stuff I am on my own.

Nerve wracking and the string of what ifs going through my head is endless, but I know my stuff and know Ellie so we should be just fine.

Knowing that Children's is 17 miles east makes me feel much better.

Ellie woke up to her aunt Beth this afternoon and was burning with a white hot flame right up to the point that she passed out on my shoulder after I hooked her up to her TPN tonight. In the time between 3:30 and 8:15 I don't think that she stopped moving or giggling except to drink her Elecare and have an ostomy bag changed.
She simply adores Beth and Beth has the energy to keep up with Ellie which is great.

Part of me wanted to fly truly solo on this to prove I could but why do it if help is ready and willing to come and play?

The weather is supposed to be lousy tomorrow, unlike yesterday when Abby and Ellie planted sweet peas along our fence,
We may have to get creative to keep Ellie entertained but I'm sure Beth will think of something for the two of them. She is just fantastic with Ellie.

And she doesn't flinch at the sight of an ostomy which makes her a double rock star.

In the meantime I will try to sleep lightly to hear the pumps if they beep in the middle of the night. Abby is so good with the mom reflexes that I hardly ever wake up when they go off. this is good for me when we are together but scary when I am alone.

I usually wake up wondering why a truck is backing up in my dream instead of jumping up to answer the alarm.

Beep. Beep. Beep.......

I'm 2

Today is Ellie's second birthday!

I'm 2!

Considering the statistics that we were given when Ellie was born, there should be a parade or fireworks today. Two years on TPN, bright smiling, and in the 70th percentile for weight and 95th percentile for height. Amazing. Cue the band.

We (and our supply omegaven) are a long way from the dreary outlook that we had back in 2006 (link to scary numbers), but we still have a long way to go.

Ellie birthday was dampened by her mothers stomach flu but we still had a good day with her. In fact, we had a better day with a stomach flu than without since I would have traveled to Maryland early this morning if Abby hadn't barfed at 3 AM. It was fairly important trip for me but weighed against possible gastroenteritis, a stay at Children's and a possible line infection, it took about 30 seconds to cancel my plans at 3:05 this morning.

My email to my boss this morning went something like this: 'Abby is sick. If she passes it on to Ellie, Ellie will end up in the hospital. Can you find someone else to pinch hit for me?'

There really isn't an answer to that and the boss was very cool about it. Nothing like a good boss.

Instead of flying to Annapolis I was on Ellie duty keeping her away from her mom as much as I could to keep her from getting whatever bug Abby might have had. Fortunately by dinnertime Abby was eating but still feels lousy which makes us think that it might have been something she ate.

So I spent the day taking Ellie for walks in the sun, playing at the playground and trying to get some work done. A tough triple but I think that I pulled it off. Ellie didn't complain.

Her birthday was low-key again this year and for the second year in a row she had no interest in cake except smearing some frosting on her face. We didn't expect it but gave it a whirl, narrowly avoiding Ellie putting her fingers in the candle flame....

She got a kitchen from her grandparents and we managed to get Ellie a Madeline doll which was better than we had expected.

Abby even got off the couch for presents but quickly returned. She feels better but still rotten.



Her Madeline doll is just great.
A big rag doll with a trademark scar on her belly. Ellie knew exactly what it was and started pointing to her belly as soon as she saw Madeline. With the train tracks that run across her belly, having a doll that is like her but famous might make it a little bit better.

All in all an amazing feat to get here in such good shape. Somehow it hasn't seemed like we were doing anything special.

With a girl like this it all seems pretty easy.
The hard part is going back and reading the posts from back then. It has to be a really good day and usually we end up with Ellie in our lap which reminds us of how good things are.

Frickin' China

Product recalls for things like toasters and Navin Johnson's Opti-grab are one thing. You go cross-eyed, you burn your house down, no big deal.

When the product gets injected into your daughter's heart once a day, and is recalled for things like 'anaphylactic-like reactions such as low blood pressure, shortness of breath, nausea, vomiting, diarrhea and abdominal pain' it takes on an entirely different meaning.

Today we learned that the Covidien/Kendall heparin flushes: that we use to keep Ellie's central line from clotting when it is unhooked from the IV pump may be contaminated with a particularly nasty chemical compliments of a Chinese factory that cut corners in the already unsavory business of making heparing from animal byproducts.

Frickin' China.

This is the third round of recalls that have gone around this year related to the same company,SPL that supplies the heparin to the pharmaceutical companies.

So instead of an average Thursday night, I spent mine sorting through the dozens of flushes that we have on hand to weed out the bad flushes from the good.

All told we had less than ten good ones to get us through until the FedEx arrives tomorrow.

The bad ones, too numerous to count:
Now we wait, cross our fingers, and hope that the recall doesn't expand to include more lot numbers. The earlier recalls have expanded and one company recalled all of their flushes.

It is tough enough to push a flush into Ellie's CVL without thinking that it might be contaminated.

Frickin' China.

For those of you who have a central line and use flushes the recall announcement is online: http://investor.covidien.com/preview/phoenix.zhtml?c=207592&p=irol-newsArticle&id=1123186

Update: This morning a fresh shipment arrived via NextDayAir from NutriThrive. We have a dozen fresh flushes from BD. When I spoke to BD this morning they assured me that they manufacture their own heparin in the US and will not be affected by the problems in China. For now we will take them at their word and spread the news around. Now that we are feeling better read the article in the NY times from this week for an scary look at how the 'dirty' heparin is made:

Link to NYTimes Article

Foods, poop and Easter

We had two clinic appointments in the past two weeks. Ellie is gaining weight and has grown another inch. Everyone is still very happy with her progress and told us to keep doing what we are doing.

Ellie's milk pump is still only at 26cc an hour for about 20 hours a day. But she has really started eating more solid food. She eats 3 meals with many snacks in between. She also is drinking sippy cups of Elecare as fast as we can fill them. We still have to watch her intake and make sure she doesn't over do it, that means only an ounce or two of Elecare at a time. And we have to make sure that the foods she is eating are always short bowel friendly. We tried macaroni and cheese a week ago, and we just recovered from it a few days ago. Lactose is not Ellie's friend.
We have found that as long as she poops at least once a day she is pretty good at hydrating her self and we can give her a lot more freedom with what she eats. This means that we do have to use a suppository every once and a while to make sure things keep moving. It works really well for her, but Gib and I hate doing it.

Ellie is also now in a play group here in town and also goes to EI (Early Intervention) with me on Thursday mornings, I have a mom's group that I go to and Ellie hangs out in the other room with all the other kids. She loves going to both and never wants to leave. I know cold and flu season are not over, but we are close enough that we decided to give it another try. (please knock on wood)

The past week has been interesting, Karlene our one and only nurse has been out for spinal surgery. It wasn't a big surgery but it does require a 3 week recovery time that does not include chasing or wrestling with a toddler. We have missed her terribly, but we are managing to scrape by. Ellie asks about her daily and when some one pulls into the drive way Ellie yells, "Ka!" and runs to the window.



Ellie is also starting to talk and sign like a mad woman. When we were visiting some friends last summer their little girl Mia showed us the sign for zebra and caterpillar. Those are now Ellie's favorite words (she says zebra while signing it and signs for caterpillar) and she just started putting two words together, this morning she said, "bye mom"as she got out of bed with her dad to get unhooked from her pump. Altogether we guess that she has about between 25 and 50 signs, some American Sign, and some Ellie sign that only we and she would recognize. We should really write them down sometime.

I'm going to finish off with some late pictures of Ellie's Easter day, we spent it at my sister's house. Dying Eggs
Running to get the most eggs
"Look! a little chick!"
"Let's see if it can swim"
Showing Alex and Claire where to go next

"Hey! there's stuff in these eggs"
And Yes, Ellie collected both baskets worth of eggs.

Mom, can you pick the gravel out of my face for me?

Ellie had a minor run-in with a baseball diamond this afternoon and has a case of road rash:

Wike my fat wip?

Apparently running with your hands in your coat pocket looks like fun but is lousy for the balance.

She was most unhappy that they had to leave the field and go home.

How she lands on her belly so often without the g-tube button hurting is a mystery that I just can't quite figure out. It must be like sitting on you car keys but with your belly....

A little tylenol for the lip and she is good as new.

She is way tougher than I am. I'm glad Abby's genes are showing through in the toughness department because if she were a pansy like her dad we'd all be a lot worse off.


All of these bruises just in time for a clinic visit on Thursday.

Really Dr. it was the baseball field.....

Happy Easter

Believe it or not, this is Ellie's third Easter.

The first was in the Yale NICU. Apparently Easter happened on 4/16/2006 even though I don't remember it happening:
The second was last year in Wellesley:

and now this year:

As we approach her second birthday it really seems like it all happened yesterday but then again we really have to think hard to remember what it was like before Ellie came along. Looking at her these days you would never know what she has been through or the number of scary days that went along with the pictures. The bright and shiny little girl that we have now makes us forget it all most of the time.

Today we took Ellie to the postponed Wayland Easter Egg hunt that was supposed to happen last week but was mercifully postponed when it was 30 and raining/snowing. Today was a beautiful blue sky day and other than it being chilly and windy, we had a great time as Ellie picked up some eggs with the rest of the under-2 kids in town:It took a total of 11 minutes which was just right considering the age of the kids and the temperature.

Ellie thought that the whole thing was lots of fun and really didn't mind recycling eggs to 'find' them again. she is such a good sport.



She even was brave enough to meet the Easter bunny and give him a high five.
And we even remembered to bring the video camera:




Happy Easter.

Gratutitous Photos

Not a whole lot to report medically. Ellie keeps increasing her pump rate and is up to 25 ml/hour with a good number of small sippy cups and solid food on top of that. Avocados, noodles, meat/tofu are all favorites these day on top of a good bunch of traditional baby food.

We have been a bit lax on the photos lately and finally pulled out the camera this weekend for some fun with Ellie's new big girl clothes. Pants and shirts are now in play since her ostomy is much happier and sometimes lasts 3-4 days between changes.

This is Ellie's tiger impression:

And her pink feather boa:

And her best friend Gus. In the morning she alternates between calling for 'Ma', 'Da', or 'Ga' when she wakes up. The Best Dog Ever!

I reached the maximum number of vacation days that I can accumulate and had to take some days off to start earning new days off so this week I am technically 'on vacation' even though I fielded two work calls this morning. Shh. don't tell Abby.

To make it an official vacation we took Ellie to the Boston Children's Museum today. Our library has discount tickets which makes it even more fun.

Ellie and I took turns driving the Bobcat.


And then we watched the turtles from below. Red ear sliders for you geeks like me.


We are heading to the aquarium later this week. Our fish girl should be a in rare form for that and I will make sure to take pictures. In the meantime we have a long list of things that we need to do around here and will let Ellie and Karlene do their thing while we pick up the house to-do list that has been gathering dust since September. Hopefully things will look a lot more finished by the end of the week.

Almost 2

Ellie turns two in a few weeks and we are starting to see he two-ness in earnest both for good and for not so good.

She has lots of opinions, has learned to cry on demand to get what she wants, has learned to operate the DVD player without help -we're not so proud of that one but it has been a long winter.

She can also say I love you in her own version of sign (see the heart?):

She also is becoming more aware of what is going on around her and also what is happening to her as we do all of her medical care. She knows things that might hurt and we have to be very careful to talk her through the things that will hurt as well as those that won't since right now she assumes that everything that comes from a tube or on a q-tip will hurt like the horrible silver nitrate that is used to cauterize her g-tube site.

We have a long road ahead of us and if we aren't careful Ellie could really hate her care instead of the very cooperative little girl that we have now. Through lots of work she will lay still, raise her hands and keep her legs down while we do sterile things which according to some other parents is downright amazing.

Another part of her increased awareness is her understanding that she has tubes and things that other kids have. I'm not sure if Abby planned this but a copy of Madeline has recently gone into heavy rotation for bedtime and Ellie loves the fact that Madeline has a scar. She even points to her belly every time that Madeline shows off her scar which is just great.

Abby attended a conference for work today that had a speaker from Children's who presented a talk on how to best work with kids who are long term patients. As we move along with this adventure, I am sure that we will learn much more about helping Ellie manage with her awareness of what is going on.

In the meantime it is looking like Ostomy Otto will be getting a friend for Ellie's birthday- the Madeline dolls apparently come with a scar.

Sometimes the best thing to do......

is nothing at all apparently.

Ellie has had a great two weeks since we went in for her last upper GI contrast study. Her ostomy is behaving, she is pooping for us almost every day with only a bit of 'encouragement' (a glycerin suppository) every few days, and her feeding is advancing to a rate that we haven't seen in a long while.

And what great thing did we do after running a load of barium through her and coming up with a plan for medications and other elaborate two-day inpatient tests?

Almost nothing.

Really almost nothing except reduce the concentration of her Elecare from 30 calories per ounce to 25 calories per ounce.

Instead of dumping the Elecare and a lot of other fluid when the concentration was high, she now is holding on to it which is great.

Very simply it is like she had chronic diarrhea through her ostomy when she was on 30 calorie formula (you would too if you only ate sugary syrup, right?).

So now we wait and watch and slowly increase her feeding rate as fast as she can handle it. The funny thing is that by reducing the calories in each ounce we can now give her a lot more calories. Sort of a two steps back and three steps forward- another round of short gut cha-cha.

And all of this because our compounding pharmacy still hasn't shipped her meds. If you are in the Boston area, try and find another pharmacy than J.E. Pierce in Brookline. They screw it up more than they get it right.

Really. I made three trips for a single prescription not long ago. and we've never had an order filled correctly, on time and without a hassle.

I guess I need to call them and tell them to keep their reglan. Things are moving just fine without any chemical help.

Commercial? Nah.

Today we had a very brief go round with the world of making money from this blog when I enrolled it in the Google Adsense program that would pay us to have ads in the margins and above the text. Apparently, if you have a fair number of people viewing your site they can make you some money. We figured that we would give it a try and see what happened.

Who really notices the ads on websites anyway?

I hit enroll, loaded the blog and saw what Google chose to fill our ads with: An ad for nutritional supplements and two ads for the competition for Ellie’s Mc-Key g-tube.

Our experiment lasted a total of 45 seconds. If you happened to visit during that time, well you are the lucky winner but you won’t see those ads anymore here. Since we have no control over these ads and realized that we may have some opinions on the ads that pop up, we debated it for about 30 seconds and pulled the plug. Quite honestly we thought that the ads would be seen as some kind of endorsement for the competition when we have never even seen, much less used the other products.

If we are going to talk about products and companies we will do it with full control and without anyone buying our space. We will start making a list of the companies and products that we use with Ellie and will discuss them in hopes of helping other parents make good decisions about how to best help their kids with short gut. We have used a bunch of products and a couple of providers for Ellie’s supplies and we will share this with others who are in the trenches and need all the help that they can get.

One great example of a product that we love is Ellie’s enteral (feeding) pump called a Zevex Infinity. A tiny little pump that is so small that it can fit with her formula into her tiny little backpack. This is the first bit of advice that another mother of a child with feeding issues gave us in our first room at Children’s before we accepted that she would be in the hospital long enough to need a private room. She told us to make sure that Ellie got a Zevex because there is nothing like it and it will change her life. She was right on both fronts- there really isn’t anything like it since the next size pump is more than twice the size and also it has changed her life allowing her to be mobile and even learn to walk and run with the backpack on without any ill effects.

We have also been told that some companies, both insurance and home providers, are hesitant to provide the Zevex for little kids, preferring the bulky competition. Our advice is to fight for this one.

There is no substitute. Except, maybe Pump-Free:

One interesting exception to all of this advertising is that Abby has started working for NutriThrive , one of our supply companies this winter so our comments about them may be seen as more than pure commentary on the company. All I can say to this is that we were very happy customers before she ever knew of a possible job and that we pull no punches to get Ellie what she needs.

All clear from Children's

I finally got through to Abby this morning before my meeting started and she told me that Ellie's triglycerides spiked for a bit to 700 last night but returned to normal less than 200 around 3 this morning. She never stopped smiling throughout the whole thing except for blood draws.

They got home soon after that and I imagine that the two of them are piecing the day together looking towards bedtime.

I am off to get a phone card to make up for the crappy cell phone reception.

A nice view of the Chesapeake but not very functional.

A lot can happen between Boston and Virginia

This week I have to be in Virginia for the week. The ocean conservation organization that I work for, Oceana, has an annual meeting of all of its staff from all over the world and I have missed the last two because of Ellie (the first was with a very pregnant Abby).

Since everything was relatively stable with Ellie, I made plans to come to this year's meeting and flew last night from Boston to Richmond, VA where I would drive on to the meeting site on Chespeake Bay.

The flight took One hour and 18 minutes. As I got off the plane, I saw that I had a voicemail from Abby.

No big deal, I'll call her back.

No answer. No answer. No answer on the third call.

Try the cell phone.

'Hi Gib!. Yeah, we're at the Children's ER. Ellie's Omegaven pumped too fast and she got all of her 82 ml in an hour and a half.'

Giglle giggle squeal in the background.

'She's fine and Dr. Puder called me at home to tell me it is okay but they want to check her blood triglyceride level.'

I was in the air for 1:18 minutes and all of this happened.

'I'll be on the 7:05 flight back tomorrow, okay?'

'No, she's fine, I'm fine. Stay there.'

"are you sure?"

"yeah, really."

"OH yeah, Colleen says hi. I couldn't get in touch with anyone else while I freaked out so I called her."

It is 8:15 right now and I haven't heard from Abby so I assume that things are good. Apparently dr. Puder has seen this a bunch so far with both Omegaven and the older lipid, Intralipid. He told us that she should be fine and that Omegaven should clear from her system well. If she had been on intralipid, things would be much different and this kind of thing is known to ruin livers...

Gotta love fish oil.

Oh yeah, my meeting is in rural Virginia and I have no cell service. Coincidentally I am not five minutes from the fish processing plant where the oily little fish are processed into the oil that becomes Omegaven.

Things are okay but may change. I am not on the road home right now but may be soon if abby says the word.

Have I mentioned what a rock start my wife is?

She's on my team.

Radioactive Mystery Poop?

Maybe it was the stay at Childrens' or the not-so-gentle effects of the load of radioactive barium that was thrown into her gut this week but Ellie has gotten her bowels in gear since we came home and has graced up with a series of poops each of the last two mornings. To make it even better her unplugged ostomy output has gone down and her urine output has gone up. These are all indicators that the food is finally going through her colon and the water is being absorbed by the colon as it it intended to work. Abby and I have to resist the urge to dance when we hear her poop (yeah, short bowel poops are quite explosive even when they aren't messy)

We don't know why this is happening but so far things look good and we are crossing our fingers for continued, er, movement in the future.

And all of this without reglan which the compounding pharmacy is still filling for us. But don't get me started on compounding pharmacies.

A very long post for the longest day in a very long time

Yesterday gave us two-part excitement and two fun filled trips to Children’s.

Round I

In the afternoon (any two part trip that begins in the afternoon is bound to be red eyed) we took Ellie in for her scheduled upper GI contrast study to look at why food isn’t finding its way from her small bowel to her colon even with a wide open opening between the two and a very tightly plugged ostomy. Once again they injected some chalky barium into Ellie’s g-tube and we all watched it on x-ray. Into her stomach. Into her upper small bowel (well, okay the first part of the small section that she has) and then into the lower part of her small bowel. And there it stopped and pooled on the upstream side of her ostomy and the connection to her colon:

Dam. And Damn.

Not only was it not passing but like the water upstream of a dam, her small bowel dilated while we watched into the mess that we had seen in the past.

We watched, off and on, for three and a half hours and this is all we saw. Which was concerning for all of us including Dr. Jennings who ducked out of his clinic hours to watch some of the process.

Ellie was very happy to run around in a Johnnie and entertain the radiology folks:

We all are puzzled by this but encouraged by the fact that her bowel returned to a normal size after we popped the plug in her ostomy and allowed the barium to drain. This is a good sign that her bowel has regained strength and is not permanently dilated and that the progress of the last 15 months hasn’t been reversed.

We are still unsure of what to do and are thinking of ways to solve the puzzle of Ellie's gut. We didn’t expect to find any clear answers yesterday but this gave us some insight into what is going on in Ellie’s post-op bowel.

A next step is to schedule an endoscopy to look around and we will also restart Ellie on Reglan, a drug that once helped her stomach to empty but also works on the colon to kick it into gear.

Round one of our adventure ended at home around 6:15 PM. Karlene was here to help us corral Ellie and get the evening under way. Making dinner, setting up TPN, getting Ellie fed and hooked up are all a nightmare when we are late coming from Children’s and having Karlene there was a big help for us.

Little did we know how helpful she would be in round II.

Round II-

Round II started at exactly 7:48 when, after feeding Ellie and getting her set up with her enteral(formula) pump, I went to hook her up to her TPN for the night. Each day as we take her off of her TPN, we inject heparin into her central line to keep it from clotting (yes, the same stuff that Dennis Quaid’s babies had trouble with). Before we hook her up again we have to flush saline into the line to clear out the heparin.

So after I cleaned her central line cap with alcohol, I connected the saline. About halfway through injecting the syringe into her line I hear a pop! very similar to when Abby pops her gum in her mouth. Then all of a sudden, the flushing gets very, very easy.

I knew something was wrong, very wrong and used the serious voice that I learned when I was working as a lifeguard:

‘Abby! I need you’

We used to call the response of the nurses at Children’s the thundering herd. Well we had our own herd last night as the cavalry came. I won't use the word thundering for political reasons and my dislike of sleeping on the couch.

It turns out that there was kink in Ellie’s line where I couldn’t see it and when I applied the normal force of the wide syringe to the skinny little line, the line swelled and burst like a garden hose or a bicycle tire.

Ah crap. I busted her line. Yup, no two ways around this one. I did it. I didn't do anything wrong, but I popped her line.

We quickly clamped her line and grabbed some stuff for a return trip to Children’s. Three Ellie blankets, the portable DVD player and the diaper bag.

With Karlene handing Ellie to me in her bare feet in the snow we got to the ER in record time where fortunately someone at the front desk overhead Abby say the words ‘central line’ and escorted Ellie and Abby in an exam room before I got in from the parking garage.

We spent a very frustrating evening explaining to the doctors in the ER about 1) Ellie’s plumbing and diagnosis and 2) what needed to happen to get her line repaired to let us go home which is essentially a 20-minute patch job if you have the tools and know-how to do it.

Apparently last night was very busy one for the surgeons at Children’s and very few people know how to do the central line repair.

Around 9:30 we boldly told a surgical resident that yes, we wanted it repaired but no, he wasn’t allowed to do it because he had no idea what he was doing.

Sorry to dismiss you but go get the boss.....

Ah, DVD's.....

Around midnight, with Ellie finally asleep in the ER room, the surgeon on call was still in surgery and they set Ellie up with a traditional (peripheral) IV for fluids since she had been off of TPN for a very long time.

A little after that up we went for a ride to the 10^th floor. Our short repair trip that could have taken 20 minutes at home if we had the repair kit was now an overnighter.

Double ‘Ah crap’.

Around 2 this morning the surgeon arrived in Ellie’s room to fix her line. In the room were Ellie, Abby, the surgeon and some surgical residents including the one that we had dismissed earlier in the evening (I went home to deal with our four legged first born who was about to pee on the couch when I got home around 1 AM).

And who, do you ask, was the one to do the repair?

Yup, Abby Brogan, Super Mom who, as she told me proudly at 3 AM when she called to tell me that things were a success, not only did the work but essentially called Dismissed Resident a dumb-ass in the process and was backed up by the surgeon on call.

Abby: ‘Um, why are you touching that? You’re not sterile.’

Surgeon on call: ‘ Yeah, why don’t you just take what you just touched, throw it away and back away….’

Someone’s manly parts are shriveled looking like he spent too much time in the pool right now.

So much for your super-fancy-med school, my wife just learned you a lesson!

Overall the repair was a thumbs up success and we were able to avoid the Operating Room and removing her line.

Ellie now has a very long central line with two splices in it, but it is still functional and she is hooked up right now making up for lost sleep from last night.

As a bonus Abby has the distinct pleasure of doing the most unholy thing that a parent of a kid with a central line can do: she took a pair of scissors to Ellie’s line. Short bowel parents look away now, the picture below may give you nightmares….

It took until 11 this morning to get rehydrated at Children’s but we made it home just ahead of noon.

Tonight is an early night for all of us…

Back where we started?

Ah, crap.

Unfortunately the last week or so has been a backward slide for Ellie and the great progress that she had made since her surgery in January.

Despite our work to plug her ostomy and force more food down her colon, it isn't having the same effect as it did immediately after her surgery. Her ostomy output is back up to the point that we are giving her supplemental IV fluids again to keep her in balance and she rarely poops for us without help from a glycerin suppository.

This is discouraging for us but at the same time it makes us glad that we weren't overly aggressive with her last surgery which easily could have reconnected her. If we had done that we might have gone backward into the days of a grossly dilated bowel. Nobody likes dilated bowels.

Instead, we pull the plug and let the pressure escape sometimes with explosive results like ~500 ml (12 ounces) of fluid gushing out at a time.

So the ongoing game of intestinal plumbing continues. Ellie is booked for a contrast study next week to see how things move through her gut and will likely be booked for a colonoscopy in the weeks after that to see if the problem lies in her colon.

Miraculously Ellie is in great spirits and continues to smile and giggle at all day and ask for 'noooodles'. And on the upside, her new g-tube is in great condition.

Things could be a lot worse than Abby and I worrying about her gut.

We do that no matter what.

Love

Happy Valentine's Day!

Is there any better love than the love between a girl and her dog? This is how they like to watch TV in the afternoons.

Ellie is doing great. Gib has been out of town all week, Karlene has only been here half of the week and I have my first cold of the winter. But other than that, things are good. Ellie has started talking more and trying new words. She has also taken to jumping on the couch and then launching her self off on to pillows on the floor. She does this with the backpack on and just gets up and goes for another round. I think my heart stopped the first time she did it, but now I am getting used to it.

We went in for an unplanned clinic visit on Tuesday to have Dr. Jennings look at few things. We will now use a longer G-tube button to plug her ostomy, will be more aggressive with the treatment of granulation that has started around her new G-tube site and we have a upper GI contrast study scheduled for two weeks from now to see how her bowels are handling being plugged.

I just have to say that I love Dr. Jennings. I went in to his clinic very nervous and with a ton of concerns. He squeezed me in between appointments and still managed to spend enough time with us that I walked out of the appointment feeling 100% better. I really like to have a plan, and a course of action planned out with Ellie. I really hate the "wait and see" approach. It just leaves me to stress out about what is happening and what could happen. I wish I could just shut my brain off sometimes.

Gib comes home tonight and hopefully we are going out for dinner! Karlene bless her heart has offered to work tonight. Now all I have to do is not fall asleep before dinner.

Happy Valentine's day to all our friends and family.

I was also interviewed for another short gut blog for Valentine's day. click here to see the interview. Sebastien's blog

Clinic Update

Ellie had her first post-op visit to the short bowel clinic (or CAIR-Center for Advanced Intestinal Rehabilitation) yesterday. All went well and eveyone continues to be very happy with her progress.

Ellie continues to grow very well even though she isn't eating or drinking nearly as much as she did before her surgery. Officially she weighed in at her pre-surgery weight yesterday, 12.0 kg (26.4 pounds for you, Gramma). She is 34 1/2 inches long which puts her in the 50th percentile for weight and 80th percentile for height. We have seen a hiccup in her growth after prior surgeries so seeing this fast recovery is a good thing.

Ellie is pooping into her diaper 3-5 times a day now and her ostomy output has slowed significantly since we got aggressive in plugging her ostomy early this week. Even though the CAIR doctors didn't do the surgery and were strongly against it when we opted to change to Dr. Jennings, they are all very happy with the results of her ostomy overall and also the results of her recent revision to her ostomy.

We are going to keep increasing her pump feeding as long as she can tolerate them (no dumping or diarrhea) and see where we can from here. Ultimately we would like to have her colon working and use the ostomy just as a pressure relief valve. That will let us peel away TPN and let her colon do the job of rehydrating her.

The CAIR doctors had a decidedly pessimistic view of Ellie's biopsy results and chose to highlight the presence of old scarring of her liver rather than the miraculous halting of the progression of liver damage that has happened since she went on omegaven. This is in sharp contrast to the opinion of Dr. Puder who tells us that Ellie's biopsy may be the subject of a medical journal article...

The CAIR team continues to stress that we need to get her off of TPN to reduce the risks that come with TPN and the ticking time bomb that is a central line. We agree wholeheartedly that we want Ellie off of TPN but are not going to rush anything.

Ellie put on quite a show for the clinic and we wish that we had brought a camera to record her performance. For a while yesterday she was parading through the clinic in a onesie, a t-shirt and her metallic pink cowboy boots. She loves them and chooses them over all of her other shoes.

A rock star.