Slow days in the process

We have had a bunch of slow days this week.


Ellie hasn't made any great progress on her treatment but hasn't hit any snags, either. She is cruising along on 2 ml per hour through her J-tube (into her intestine) and has been pooping regularly for us.

She is showing some signs that this tiny amount may be her limit for now, however, when she gets uncomfortable for no reason. Tonight, she spit up a bunch of green bile for the first time in a while. Her surgeon told us that her intestine can hold many days worth of food and that by the time that this happens, she may be very full down below, which is a bad thing. we are trying to get to the point where we can see that she isn't tolerating her food and slow things down to avoid over inflating her bowel. This is a fine art and tough to do, but we are trying.

We spoke with her suregon today and we are going to try to treat her medically with a new medicine (cisapride, or propulsid) which was removed fromthe market a few years ago because it causes heart problems in a very small percentage of kids. If she is approved for the study that is being done here at Children's (the publish or perish rule kicks ass) she will go on this wonder drug and be monitored very carefully to make sure her heart is doing well. The doctors light up when they talk about this drug because apprently it puts a lazy bowel into gear very well, something that Ellie needs right now.

Ellie is still in great spirits and continues to be great fun for Abby and I, her nurses, and her audience of visitors.














We are trying to get her to stick her tongue out but haven't made much progress:

Baby Faces

Sometimes as I spend the hours and hours with Ellie making faces and having conversations with her, I think about the movie that they showed us a Karl Marx Elementary School called Free to be You and Me,

I think that Mel Brooks sums it up pretty well:

http://www.youtube.com/watch?v=WDC9bKMLZqw

Here is one of the endless streams of faces our girl and her new friend Christian make for us each day. He was here for the weekend getting on the Omegaven bus with us at 14 months.

Steady stream of new faces

We have had a bunch of visitors in the past few days that Ellie has charmed and done tricks for. It is always nice to see new (and familar faces) in the hospital and show off the girl and her fancy hospital penthouse. It really isn't what you would expect a hospital room to be like and the decorations covering her walls make it even less institutional. Maybe I will do a virtual tour like the Real Estate websites and show off all of the amenities beyond the rack of pain chair/bed that I swear is wearing out under the strain of my girth.

Abby's mom is in town to visit for the forst time since April. Ellie is a lot healthier and happier than when her grandma saw her last at Yale and they have been spending some time together over the last few days.

My sister came down yesterday to give blood for the cause if Ellie needs it. since my Lyme experience I am off the list and so is my brother (who lived in England during th e90's apparently) so it is up to Kateand my cousin to be the donors du jour if we need it down the line

My folks stopped by yesterday to see the girl as well. My mom spent last weekend Ellie-sitting and saw plenty of her but my dad hadn't seen her in along while (all of ten days, the horror!!) so we set him up with the girl for a rousing session of Irish songs. I will spare you all the video of the big guy singing songs to his granddaughter. Not enough Kleenex for that one.

My boss's boss from Washington, DC stopped by today for a visit while he was in town as well. Since I work remotely, nobody from my job has seen her even though my boss Phil was close to seeing her since Abby went into labor 36 hours after he left in April. It was nice to see him and show off ellie's new tricks. Apparently he was expecting her to be much smaller. It made me happy to know that she was exceeding expectations sizewise.


A busy few days and I need a nap after last night on the chairbed. But Ellie enjoys all of the new faces and we'd love to see anyone if they are in the area.

Sweater season

It is finally cool enough to play dress me up Ellie with the great sweaters that have sat in her drawer for so long.

Under Contract

We got great news from Connecticut this morning. After two days on the market (after a new kitchen floor it wasn't available to be shown until Wednesday) we got an offer for our house. A couple saw it, loved it like we do and offered just a bit more than the asking price. We are silly but not stupid and happily accepted and signed an offer this morning. Signed dealed, delivered. Done deal.

We will close in late September and officially be relocated to Boston.

My how things move when they get in gear.

The remarks from the buyers were just great and they thought thte house was fantastic.

Thank you to everyone who helped us polish it this weekend and make it look so great. I am still getting the mud out from my fingernails but it was all worth it.

Ellie gets a friend

We got an email from a parent of a TPN child in NJ/Pennsylvania (correction: Child on TPN) earlier this week who wrote to tell us that she and her baby, who has almost exactly the same problem that Ellie has, are coming to Children's to see Dr. Puder and get some magic fish squeezings. They are one of the families that learned about it through the unintended but great expansion of this blog to the world beyond our families and pre-Ellie friends.

It is still strange that my idea to chronicle this experience through a blog is having an effect on somebody else's baby hundreds of miles away, but I think that it will be very real when we meet this family andtheir little boy.

It will also be neat to have another short gut family at Children's to talk to and compare notes, even if it is just for a few days. Most of the other short gut kids have gone home since they are older than Ellie and further down the road to eating.

Maybe he can teach Ellie to move her bowels like she should.

By the way, her latest bilirubin was too low to measure. we get an L where the number should be.

Delayed, my ass.

The evning that Ellie had her first surgery (day zero) I asked her surgeon whether she would be delayed in her development because of her time in the hospital. She told us that overall, hospitalized kids are late reaching developmental milestones because of their time in the hospital.

Even though Abby and I never discussed it at the time, we both sort of took that as a personal challenge and we have done all that we can to make her as 'normal' of a baby as we can despite her long term stay her in the penthouse suite.

The nurses and physical therpists tell us the they are amazed with her progress at doing baby things. One nurse told us the other day that she believes that it is because we spend so much time with her, time that most other babies in the hospital don't get for one reason or another. We are very fortunate to have the time to spend with her.

This week she has started to do more cool growing baby tricks.

She likes to stand:



















And just this week she has started to pick her head up and look around when she lays on her belly, a trick that she should have done sooner but she hates being on her belly except to sleep. You would hate it too if you had that many tubes coming out of your belly.














We even got good video of the standing up game:

http://www.youtube.com/watch?v=mS5bRSEa5Zc

A Tuesday Update

We got an email today from Kate at the aquarium (one of the fearless laborers from this weekend) expressing her dispair over our lack of postings this weekend:

'128 visits a day x 5 days without an update = 640 moments of d'oh!

We have become dependent on updates.

Sorry to be so needy."

It has been a very long weekend and we cancelled the internet at home in April.

Ellie is doing well. No great progress but she is stillthe silly, happy, little girl who giggles at the nurses, the housekeeper, her mom and I wnenever anyone makes eye contact or pays the least bit of attention to her.

She had her G-tube replaced last Friday with a GJ-tube. The same concept as a G-tube but it gives us access to her stomach and her small intestine. Very simply it is a tube within a tube and one tube stops in her stomach and one extends through her pyloric sphincter (huh, huh, sphincter....) and into her small bowel. Smae hole in her belly, but she now has a permanent extension tube that cannot be detached and instead of having one port to inject or remove fluids, she has two.

We have been giving her food directly to her bowel since friday. No great change. Same small quantities.

Bummer. But it is what we had expected and we are going to talk with the doctor this week about a new strategy to plan for if the GJ-tube doesn't perform as hoped.

We expect another surgery is in the works but don't know when. Like the earlier surgery, we are getting past the if stage and on to the when stage. We are ready to get the coach in gear no matter what.

Sorry there aren't any pictures of the girl.

Some kind of help is the kind of help that helping's all about...

This weekend was a tremendous success. Our house is on the market and will be shown to the first set of people tomororow morning. It is looking great and we hope that it will sell pretty quickly since it is quite bargain to find any house in Connecticut for that price (which, coincidentally, we couldn't afford if we were shopping for our first house right now instead of two years ago).

How it got ready to sell is nothing short of amazing.

Abby and I went to Connecticut on Friday morning with a list of things that needed to get done before the house could be shown thanks to our realtor's careful review of the house last week. It was three pages long. It had a mix of some ambitious projects along with a long list of really crappy grunt tasks that were no fun for anyone especially in August.

On Friday afternoon the first of our willing volunteers arrived and through out the weekend we had a steady stream of bodies. Weeding, painting, lifting heavy things that were covered in mud, they all got done without a bitch. Some came for an hour or two, some for much longer.

Amazing. Someone said that that is what you do when friends need help. We are touched by the support.

But the grand award for tremendous work has to go to my three cousins from New Hampshire.

They are three brothers who have always been very smart and really good at technical things. One is a software designer, one in college for technical management, and one for engineering. Since we didn't have any programming to do, I stupidly figured that they would be warm bodies in the line of bodies for the weekend. I foolishly thought that Abby, my brother John, and I would be 'the brains' of the operation.

Very foolishly, I learned quite quickly.

These three arrived on Friday night and by seven on Saturday morning had studied the list of tasks, developed a systematic way to tackle each project in order, and were at work by 7:05.

Abby, John and I kept looking at each other and resigned our posts as 'the brains' of the show by 7:06. These guys knew what they were doing, knew what their brothers were doing, and checked off tasks as they finished.

Installing caulking and painting the crown moldings that Abby I had started and stopped on three times? check.

Wiring the vent hood from the fuse box? check.

Fabricating a metal cap for our chimney that was off sized and could not be purchased? check.

Painting the L.A. Laker purple bedroom (Abby's idea)? check.

They worked without a pause until 5:00 PM on Saturday. No matter what is was it got done and by 5 PM on Saturday we were most of the way done with the list.

A very fuzzy morning later (did you know that PBR comes in 30-packs?) and we were down to a lot of cleaning and some swety manual labor but by 3 or so we had everything checked off the list, and were waiting for the RE agent at 4:00.

We are still reeling from the emotional and physically draining weekend but it is done and we can check that giant set of tasks off of our list.

Thank you to everyone who came and did so much for us. We appreciate everything that you did.

Now to find a place to move all of that stuff up here that we can afford.

Another tall task, but we'll figure something out.

http://www.youtube.com/watch?v=p3XSs_EOK1g

Nine fingers in

Ellie has discovered her fingers and how good they taste. Most of the time there is one whole hand worth in there and the other hand sometimes finds space.

No great news today. still moving along with very slow feeds and seeing where it goes from here. She will get an 'emptying study' done tomorrow to see whether the sphincer (huh, huh, sphincter....) at the bottom of her stomach is low or if the issue is further on down the tube.

We start on the road to selling the hosue tomorrow with a short trip to CT to the doctors and a trip to talk about getting a new floor for our kitchen to replace the very dingy one that is there now.

Then we head down Friday and will be there through Sunday. Hopefully we can use the volunteers that have come out to help to get through the list of not so glamourous jobs that need to be done after Abby walked through with the realtor on Tuesday. we are shooting to list the house on Monday.

We won't be going down later this month, so this weekend is it.

For those of you in Connecticut who have asked what you can do to help, this is it. We 'd love to see you for an hour or two if you can spare it. If by some chance we run out of things to do, come and have a beer and say hello.

Abby is the job foreman (was there any doubt about who is going to run the show?) and her email is abbybrogan@hotmail.com. Let her know if you are coming or ask for directions. My job is sweaty, heavy lifting and repetitive labor that doesn't require much talent.

I hope the weather is good.

Body language

The doctors have told us that we are going to become the best indicators of ellie's condition as we move along through her treatment and that we will have to give feedback along the way to keep her from having troubles.

Lesson number one- when you see this face, take cover, there's barf in the offing and it is coming with force.

Fortunately this was false alarm. 

Out for a walk

No great news today, I just like this picture of my girls. 

New Philosophy, Happy Baby

Now that Ellie's line infection has seemingly gotten under control, we have started feeding her again to keep her bowel happy and keep her moving down the road. Moving down the road but with an entirely different driver.

Dr. Jennings believes that Ellie's dilated bowel is very stressed and that our goal should be to bring it down in size first and foremost while allowing it what it needs to continue to thrive and be there when she needs it.

The plan is slow feeds (2 ml/hour)for a week or two. Just enough to bathe the insides of her small bowel with food which will keep it healthy and active, but not so much that will stress her bowel or, even worse, make it larger and less functional. His estimate is that Ellie's bowel can hold 500 ml of food before it backs up and that we could have a problem with overfeeding her and not know it for days or even a week before she shows us that she is over fed. The big quantities that we were so excited about a while back could have been bad thing.

Slow and cautious feeds is the order of the day.

On Thursday night we thought about starting her on the pump but opted not to start her on a new thing at night. We learned this the hard way- sometimes she has trouboles with the first day of food and it is better to have those troubles during the day instead of at 3 AM.

Friday morning we started her with 2 ml bottles throughout the day. She wasn't too keen on them. I think that she amy have forgotten what they were but she was ready to roll on the later bottles that day. She got eight hours worth of food by the end of the day.

Since continuous feeds are easier on the pump at night when we met with Dr. Jennings that night we agreed to put her on the pump that night for another 8 hours at 2 milliliters per hour.

She tolerated this for six hours before giving me the 'full' sign with stomach cramps, a sore belly and kicking legs. We stopped the feeds and gave her Saturday off. No pain, no cramps.

I like this slow thing.

Saturday night there was some question about how we would go about her feeds. Abby and I were nervous about overfeeding but we knew that she needs something in her belly to send down the pipe. On the other hand, the resident on duty had orders to feed her at 2 ml an hour.

Knowing Abby, I shouldn't be surprised how this story ends. Not only did we successfully feed her how we wanted to, but by the time we finished talking to her, the resident fully supported this and let us write the feeding plan for the night. Yup, handwritten notes on lined paper at her bedside.

I guess that it follows the cardinal rule of babies: You know your baby best. Sometimes it takes a little persuasion to get this across.

So far so good on the feeds. she is slurping the tiny bottles and taking the pump feeds at night.
Hopefully things won't back up and we can let her bowel come down.

A long way from the earlier feeding plan of push, push, push. This makes a lot of sense and we are very happy with our new fearless leader.

Ellie likes it, too.

Temporary Becomes Permanent

Abby and I made a command decision today that has been coming for a long time- we are going to sell our house in Connecticut and move to the Boston area.

Ellie is going to need care for a long time as an inpatient and then as an outpatient. Boston is a long way from Connecticut when we need to see her doctors. I think that the line infection has shown us that it takes above average doctors to pick this up and recognize it for what it is. We need a great hospital and Children's can't be beat.

We have incredibly supportive family near Boston and more to the north that will be a lot closer if we are in Boston. Having this support has kept us going when things started to suck and we may need to call upon them in the future more than we do now.

Finally, after more than a month of searching for in-home nurses in our area of Connecticut, the hospital hasn't been able to find a single nurse in our area to provide even a portion of the care that Ellie will need when we go home. Repeat: when we go home. We are good with her medical procedures, but Ellie will need real nurses for a lot of her care. Boston has many, many more resources to get her what she needs which will make her care much smoother.

This was a tough decision for us for a lot of reasons- Abby had to resign from her great job at the aquarium after five years of advancing through at a speed that nobody could believe. We also have great friends in the area who have been amazing since Ellie was born and we will miss them all very much. Finally, we love our house in Connecticut and have spent a lot of time and sweat in the past few years making it ours, including painting our bedroom walls LA Laker Purple, which is asurprisingly soothing color for a bedroom, believe it or not.

We also painted the cutest nursery that Ellie won't ever sleep in. That must have been the beginning of the jinx.

This leaves a lot of things up in the air. The Boston area is very expensive. We may not be able to afford a house in the area or may have to buy one that is a lot different than our cute little house . Living in an apartment may be on the horizon for us as well. We will have to see what happens.

We are going where we need to be for Ellie.

I guess that we are very lucky that she doesn't need to be in Pittsburg.

Yet.

We want to get our house on the market when things are still green and the gardens are still in bloom. We are heading to Connecticut this coming weekend and then again on the 23rd and 24th to do the work that we need to do to get it ready to go on the market. Weeding, planting flowers, cleaning, repainting the purple walls........

If anyone has some time those days and wants to sweat a little, we'll buy the beer.

It is a very cute house if you know anyone in SE Connecticut who wants to buy a house.

Site Meter

About a month into this experience with a blog (which is very addictive when you have something to write about), I installed an internet counter onto the page to keep track of how amny people have looked at the page, where they come from and how long they stay. I admit that it is a heavy dose of internet Big Brother to add this and I would otherwise avoid tracking people, but it has been an eye opening thing for me.

For example, since I added the counter there have been more than 8,200 visits to Ellie Brogan, averaging 128 visits per day. Now my mom and my sisters visit a lot and assorted relatives also, but that leaves a whole lot of people out there that are looking that I can't account for. In places like Iowa, Nevada and Pennsylvania, only one of which i have ever set foot in, there are people looking at my baby and reading about her adventures.

Sort of strange. Sometimes I feel like my fly is open for the world to see. Other times I hope that a crazy person out there doesn't come looking for us. I usually think about that at two AM in the hospital, though when I can't sleep. It really wouldn't be that hard to find us.

Stranger still is the fact that I may have actually helped some people whose kids have similar conditions to Ellie's. These folks are now asking or demanding of their doctors the same treatment Ellie is getting in their hospitals. I learned today that two families in Canada will be on Omegaven soon that learned about it through this blog. Ellie's Omegaven doctor stopped in today to thank us for the blog and told us that we are helping kids all over.

I honestly never thought that this would be anything more than a diary and maybe a way to send photos without having to send huge emails.

Saving babies is a long way from a personal diary.

Heavy to think about.

Smooth surgery

Ellie had her surgery this mornong to have another central IV line installed. We were in by 7 and out by 11, smooth as silk with no nasty after effects. we advised the anesthesiologist about her morphine issue (I refuse to say my daughter has a morhine problem) and they listened to us and modified her care accordingly. I guess that it is true that you are you kid's best doctor and nurse.

The new line is in her chest like the other line, but on the right side of her sternum instead of the left.

She still has the IV's just in case (including the scalp IV) and will keep them for a few days until they come out. No reason to lose them if they are good sites.

A few more weeks of antibiotics and we will get back on the road to adaptation.

Look I'm a real patient!!!

Since Ellie's central line came out on Friday, she has gone through too many IV's to count. Both ankles, both arms and today, to make things really interesting, her scalp!!!

It is only for 12 hours until she has surgery tomorrow to get a new cnetral line but it is scary for all of us. The IV is not all that fragile, but Ellie has the tendency to pull IV's and if she loses this between now and tomorrow morning's surgery, it will be a real pain to bring in the IV team and stick her again.

I hope she sleeps right up until tomorrow AM when she goes in for a new central line.

One of the things that I noticed this afternoon as I did laps around the floor with her is that she looks like a patient all of a sudden. Not that she looks all that great, but sometimes when she is off the machine and her lines are hidden, I feel like she isn't a real patient like the other kids that we see who have stuff hanging off of them .

An IV in the head makes her unmistakably a patient.

Another day, another bit of medical fun.

A Busy Weekend for a Little Girl

We learned on Friday morning from her doctor that the infection in Ellie's central IV line had to be removed since it was most likely the source of both her bacterial and yeast infections. This was bad news for us but we knew that removing it would most likely let her heal from her infection more quickly so that we can get her back on the road to recovery instead of spending weeks fighting the bugs.

On Friday afternoon she went back to the operating room to have the central line removed. Under general anesthesia she had the minor surgery to take out the central line hardware in her body that was put in during her last surgery in June. The surgery was a success and she came out of the surgery just fine.

In the recovery room she was uncomfortable and in some pain from the surgery and was given some morphine to help with the pain. This was a problem for her in June and made her heart rate and respiration rate go down to scarily low levels int he hours after her first surgery. The doctors thought that it was an interaction between the Fentanyl (which was in her epidural) and the morphine which made her have problems in June so they tried again on Friday.

She must have an aversion to morphine because soon after the surgery, she had the same reaction that she had in June and Abby spent a very long night on Friday with a sleepy little girl who was watched very carefully and spent the night on a heart, Oxygen and respiration monitor. She was alert and aware when she was awake, but was very very sleepy the rest of the time.

It is now Sunday and she is on the road to recovery. She is happy and cheerful but still very very tired from a very long series of days. We have come back to abby's sister's house for the night since Sue, her head nurse, is on tonight. we will be back in to see her in the morning and hope things are moving along as well as they have since Friday.

Fortunately, removing the old central line has improved her blood work and it looks like it was the major source of the infections. We hope to have another central line installed sometime this week. Right now she has two traditional IV's (one in an arm and one in a leg).

Not fun for a four month old baby (17 weeks ago today to be precise).

What? Me sick?

Ellie's infections continue todayand it looks like her central line will be removed this faternoon or this evening, whenever there is a slot for her in the OR.

The real bad guy right now is a persistent yeast infection in her line and her blood which is being kept around by the central line itself, which acts like a reservoir for the bugs. Getting it out will hopefully let her clear the infection faster and then she will get another line put in as soon as the bugs clear up. It may be weeks before this ahppens though since the bugs are so entrenched in her.

The good news is that the central line site isn't gone forever and the site could be used in the future after it gets a chance to heal and recover.


In the meantime, Gut Girl, just keeps on smiling and making faces at the line of people that come to see her and do things to her.



A nice video from this morning is on YouTube:

http://www.youtube.com/watch?v=aQehsT3Ni_w

It may be mid afternoon on Friday before it is up.

Big day for a little girl

Ellie has had a very busy day today so far.

In addition to her steady stream of IV drugs going into her system (5 or 6 different drugs at this point delivered every hour or so), Ellie has done all of these things too:

At 9:30 this morning a new IV line was installed in her arm because the doctors are afraid that the lingering infection in her central line will force them to remove it tomorrow. I really hope that we can keep this line site because it is a very good site that is easy to maintain and also because there are a limited number of sites for her to use and losing one this early would sucko.

As soon as the IV line went in, she had her daily blood tests drawn.

Then we were off to Radiology for her more frequent KUB (Kidney-Ureter-Bladder) lower abdominal X-rays.

Some more drugs, then it is time for a blood transfusion to make up for the volume of blood that has been withdrawn from the Bank of Ellie this week. Which brought about the following conversation:

Gib: Wow, that looks like a lot of blood in that IV to go into a little girl.

Jill, the nurse: She doesn't get it all, just part of it. The rest is in case something happens.

Pause. Pause. Really gory thoughts. What could tha what if be? It's gotta be gory. Leaks, sprays of blood from the IV bag, pools of yet to be transfused blood.

Jill: You know, if the line clogs or something like that.

Gib: Thanks for telling me that. I was wondering what that meant.

We hope that she will be happier with some more juice running through her. she is sleeping a lot today, but like I said the other day, you'd be sleepy too if you had her schedule.

Not quite a foxhole

There is pretty good movie that came out a few years ago called In Good Comapny. In this movie a young kid asks for advice on finding the right woman:

'Dan, you seem to have the perfect marriage. How do you do it?'

'You just pick the right one to be in the foxhole with, and then when you're outside of the foxhole you keep your dick in your pants. '

'That's poetic.'

For the past few months I have been realizing that I have been incredibly lucky to have Abby in this foxhole with me. Day in and day out, Lyme disease or none, she is there kicking ass and doing everything that needs to get done for our girl. She doesn't take shit from anyone and does it all with a smile.

Even after all of this crap, we still make each other laugh every day, usually with some low quality scatalogical humor, but hey, we have Gut Girl in the room, poop jokes are always ripe for the picking.

I told her before we got married that I would be happy in a steel box without a door as long as we were there with a deck of cards or could just talk to each other and play 20 questions.

Well today we got to put that one to the test.

Two words: New Elevator.

The story goes something like this.

Children's had four patient elevators when we got here in April. Patient is a good name for them since they are very, very slow and at least one of the four has been out of service at any given time during our stay. I have joked with other parents that I don't care if they are slow or make extra stops as long as the stops are on floors and not between them.

To remedy the long waits, the hospital installed two new, shiny elevators this spring and they opened for business this morning. In fact I was on the first car of the day as I came upstairs with my morning Globe. Gotta love that new elevator smell.

This evening Ellie, Abby and I went for our evening tour of the hospital and were on our way back up we hopped on the new elevators, Abby holding Ellie and me pushing the stroller.

Halfway between the 7th and 8th floor I decided to step over to see Ellie and make faces at her. I guess my 225 pounds upset the tender elevator because just like that the elevator stopped.

Dead in the water.

An hour later, when the repairman finally opened the door, I really think that we shocked him. Instead of hysterical passengers who rushed to the door, he found Abby and I, laughing at the latest addition to our list of movies and TV shows with bad elevator scenes and the horrible ways that people die in elevator accidents in the movies.

Ellie's TPN was due to be hooked up so we quickly handed Ellie to her nurse before getting us out. As she walked away she told another nurse 'thank God it was the Brogans who this happened to. I don't think other parents could have handled that." It amde us feel good to know that we aren't pain in the ass parents, at least.

Even stranger was the look on the repairman's face as we talked to my sister who is Ellie's guardian about whether she would adopt Ellie if we met our unfortunate ends in a tragic elevator accident.

If you go that way, it's just your time to go.

We're not sure who we pissed off to have the string of luck that we have had, but Abby is starting to look for Hurley's numbers from Lost. We also think that we have found a way to absorb the shock of a falling elevator to protect Ellie if we need to.

Just another day in the foxhole.

Sepsis

Ellie is doing very well today. She is alert and awake and looking around when she is awake, but sleeps a more than usual during the night and during the day. Hey if you had an infection like she does, you'd sleep a lot, too.


One of the most amazing things is the look on the doctors' faces when they come to look at her every day and discuss the treatment for her infection, which we have narrowed down to being a gram negative rod infection of her central line and also her blood itself. One of the nastier of all infections.


'Wow, she looks great. Not what we would expect."

That is quickly followed by: "why are her lips so blue?" The medicine that treats the thrush in her mouth dyes her mouth and her clothes a nice purple color. If only it weren't purple. I've got a daughter who looks like she borrows A-Rod's lip gloss!!!!

This prompted me to ask Ellie's Omegaven doctor this afternoon whether this was a great side effect of her fish oil treatment.

He told us that with Omegaven kids, their body's reaction to the infection is not as severe as kids on other lipid sources. It is the body's reaction which makes these infections have high mortality rates and that they generally Omegaven kids haven't gotten as sick as other kids.

Yes, the infection that she has has mortality rates associated with it. Somewhere between 25 and 30% of all cases from what the doctors tell us. That includes the kids who become very very sick and go to the NICU. Still this is an eye opener for us and very scary to think about.

Fortunately, knock on wood, Ellie's infection was caught very early (a blood culture was in the works even before a fever came on) and she is doing well on the cocktail of antibiotics.

Thanks, it seems, in part to a nice foundation of menhaden squeezings and a very alert doctor who watches ellie's blood work like a hawk.

Nice catch, Dr. Puder!