William Pics #2

Here are some more pictures of William. We were discharged from the hospital yesterday. We have all been recovering trying to sleep as much as possible. Right now William is spending all his time eating and sleeping. Now here are some more pics of William and his family.

William and his Aunt Jennifer

What the house looked like when we got home. Thanks Sara, Jennifer, Karlene and Ellie!

Karlene, Ellie and William

William in a blanket that his Aunt Karen knit

William and his sister

William Gilbert

Ellie got a little brother this weekend:

William Gilbert Brogan arrived at 2:47 AM on Sunday. 8 pounds 11 oz. and perfect.

The question now is how long will it take us to get used to a typical kid, doing typical things. Poop, eating, and sleeping are all new for us and force us to admit to the nurses that we are not quite first time parents.

Abby and I both look to clear IV lines when we pick him up.

Ellie wanted us to know that he shouldn't be afraid about dressing changes and wondered where his ostomy bag was because that's what babies have.

How different it would have been to have the complicated kid come second.

Saved by a fish, Swims like a fish.

It has been a very long while since we have reported Ellie’s progress and I thought that it would be good to bring this blog up to date with some info about how the girl is doing. In a word, fantastically. So well in fact that we have very little time to sit down and write about it.

But more specifically, now that we have the time here are the newest developments.

We have had a pretty rough Spring. Ellie’s Bacterial Overgrowth (caused when the bad bugs flux up into her small bowel from her colon) made her gassy, and vomit a lot while taking her appetite and dehydrating her all at the same time.

No fun for anyone. All to often it leads to a funny/awkward scene at the mall with me standing over a puddle of short gut barf trying to flag down a janitor before someone slips and falls as Abby and Ellie run to the bathroom before the second wave hits....

It looks like four courses of heavy antibiotics including seven-day courses of Flagyl, followed by Cipro, followed by Vancomycin, and another course of Vancomycin over an eight week period this the spring has finally done the trick and knocked down the carpet of bugs.

We treated the effect and then hunted down the cause. We finally thought of her overnight hydration. In the end of March we decreased her nightly IV infusion from 750 to 500mls. Not a big change but big enough. Two weeks after this change is when the overgrowth reared its ugly head. The fact that it wouldn't go away meant that we had to find the cause. And about two weeks ago we finally did. Bump her back up to 700mls a night, and Presto-Change-O, SHE"S BACK!!!

Ellie’s appetite is back now and she is doing quite well eating three meals every day, asking for snacks in between. If she had her way, she would eat nothing but macaroni with olive oil and wheat thins. Her mother and I do everything we can to get protein into her diet and she is doing well with scrambled eggs, ham, chicken, and Boca sausages.

Top this off with a liter of Elecare and you have a recipe for a growing girl. In the last two weeks, she has put on almost two pounds of the weight that she lost since getting overgrowth in the early part of the spring.

With all of the food and fluid going in, you might ask about her bowel habits. First off, she is very proud of the fact hat she has been wearing big girl underpants for a long time now. Each day she starts out by taking on the persona of the Disney Princess on her drawers and most nights she can even make it through the night with the TPN pump going with only one call for help to carry her pumps into the bathroom for her.

Accidents are quite rare and most days see between one and three poops of varying consistencies*. If she gets backed up, she gets nauseated and uncomfortable, an indication of how ‘short’ she really is but we have learned to recognize these signs and get her bowels to clear and make room below.

*This is the part that she will crucify me for writing when she is 14. Sorry, Ellie, it’s public service, I guess J

Unfortunately our bumpy spring has slowed our doctor’s ambitious plans to have her off IV fluids by the fall and in fact, we had to increase her TPN this spring to keep her weight up. Right now she is on 4 nights of TPN a week with Omegaven, and just D10 on the other nights. It is working to keep her weight increasing and also keeps her well hydrated even when it is hot. Those are good things right now.

We have TPN clinic in a few weeks and will likely get advice to wean a night of TPN. If the magic scale at Children’s shows her weight holding its own, I am all for it.

Another exciting update is that our little swimmer has been improving rapidly in her aunt’s pool over the last few weeks and now swims, with just her bubble on her back, from one end of the pool to the other and rarely needs help. We have had a lot of practice and are getting quite good at waterproofing her Central Line to the point that everything is dry when we are finished.

Our Recipe for success in pictures:

1) Wrap Press n’ Seal tightly around the CVL cap making sure to cover the threads of where the cap screws onto the line.

2) Coil the line plus cap over the dressing

3) Cover the coiled line and dressing with a large piece of tegaderm so that nothing is sticking out, and voila, you are waterproof and submersible.

More often than not everything under the tegaderm is dry and we just pull off the tegaderm and leave the dressing. If the dressing is wet we change it ASAP but, because the cap is covered with press-n-seal it stays dry. That be said, more often than not we change the cap after a swim day. The risk is just not worth it.

Ellie swimming has been great for her, but even better for us. Imagine two marine biologist having a child who's life is saved by fish but cannot swim. Finding a way for Ellie to swim and seeing her love it as much as her parents do is, priceless.

The final bit of news is Ellie’s first big girl haircut. This weekend her long hair became too much to manage and we got a bit aggressive with the scissors. The result is our four year old who seems to be channeling her inner Natalie Portman in the The Professional:

I’m trying to avoid the mental image of her telling me, “I've decided what to do with my life. I wanna be a cleaner.”

HE DID IT, 13.1 miles with Short Gut!!!

Dave Vermette ran a half marathon yesterday. Remember this is the man that is missing most of his small bowel due to Crohn's Disease and he is on TPN.

Check out his blog for pictures: http://thriverx.wordpress.com/

One picture you will not see is this one of his jersey. Check out the third name down. I have been saying that Dave is an inspiration to me and will be an inspiration to Ellie when she is older. But it seems that Ellie has been an inspiration to Dave the whole time.

It is so good to see someone defying the odds and refusing to settle for a life that the doctors told him he would have to live. The training was not easy, and not always fun. But the smile on his face yesterday was amazing.

I also think some of the other runners were a bit jealous of the IV bag he hooked up to after the race.

GO DAVE, GO!!!!!!!!!!!!

NSTAR walk for Children's hospital

We just finished the NSTAR Walk for Boston Children's Hospital. We walked 2 miles with team Blaise! The team was made up of Blaise and her family, and Faith and her mom, and some great friend's of Blaise's. As a team we raised just over 3,200$. No to shabby.

Ellie and Faith

We couldn't help but think of the last time we walked and how different Ellie was this time. Other than the fact that she is 3 older. Differences: No ostomy, potty trained, finishing her first year of pre-school, off of TPN and back on, and she is starting to read. Gib and I hoped during the last walk that 3 year later she would not still be on TPN, but hey, things are pretty good and we are not complaining. Ellie had a great time this time and walked a fair amount of the walk. She really liked looking at all the duck and geese along the way. She also loved all the after race festivities. Like getting her face painted, getting metal for finishing and the Blue's Clues moon bounce. She also love collecting all the swag from the vendors.

It was also fun to catch up with Blaise's parents and Faith's mom. We had dinner on Friday with everyone and as always it is so nice to talk to people that have been through what you have been through. We hadn't meet Blaise's parents in person before, we had emailed and talked on the phone but that is it. We also hadn't seen Faith's mom since right before they went home last year after coming out here for Omegaven. It was amazing how big both girls were and how great they are both doing.

During the walk today we ran into a bunch of the nurses from 10 East and the child life specialist. It was good to see them outside of the hospital. I don't think we say thank you to them all enough. They all always do so much for us to make our stays at the "inn" as pleasant as possible.

To all the nurses on 10 East and Lakeisha (the toy lady as Ellie calls her) .....Thank you, Thank you, Thank you.

It was a vary fun day followed by Ellie not taking a nap

Short Bowel Hydration Hints

I am posting information about a Webinar that ThriveRx is hosting next Friday, June 4th at noon. I just saw a trial run of the talk and it was fantastic. I really wish I had seen it about 3 years ago. The talk is free and open to anyone. It centers on oral hydration tips but it would work for those without short bowel as well.

“Hydration Hints for the

Short Bowel Consumer”

Presented by Maria Karimbakas, RD

June 4^th at 12 noon

Topics to be discussed:

v Causes of Dehydration

v Signs and Symptoms of Dehydration

v Treatment Options

v Preventing De-Hydration

v Review of Oral Re-hydration Solutions

Maria Karimbakas is a registered dietitian. She has worked at Brigham and Women’s Hospital in Boston, Nutritional Restart Center in Hopkinton, MA, and currently she works as a consultant for ThriveRx. Maria has co-authored several abstracts and papers on the subject of diet and SBS.

You may access this program by phone only or via the web.

To register for this event please email Abby Brogan at abrogan@thriverx.net.

2 Hours 20 min

Another record for Ellie. Fastest UGI since she was reconnected. Very good news. They saw a bit of dilation but not blockages or narrowings. We were very happy and said, "ok what IS wrong then?" We are brainstorming and trying to come up with some ideas. This is the part of Short Gut I don't love, the guessing part. Since no two short gut kids are the same, you just have to try everything until you find something that works. UGH.

UGI

Yes, that means Upper GI study. About a month ago Ellie started having all her normal signs of overgrowth.

1. Stinky poops and gas
2. Increased gas
3. Decreased hunger drive
4. Yellow colored very loose stool.
5. Vomiting in the late afternoon/before dinner.

So we called CHB and got her on a week of Flagyl. No change. Maybe we targeted the wrong bug. Start one week of Cipro. No big change but a bit better. Ellie's nurse comes down the stomach bug and Ellie starts vomiting more frequently. We chalk it up to the bug and wait it out. Last week we finally called CHB, squeezed in to a last minute clinic appointment. She lost just over a pound in the past 2 months. They started her on a week of Vanco and added a night of TPN. We talked to Dr. Jennings and he said a UGI might be in order, and Gib and I begged to try everything else first.

Now it is a week later, all her signs of overgrowth are gone, but she is still vomiting. UGH.

So this afternoon we are headed to CHB for an UGI. I hate these. Ellie doesn't mind them too much, they do not involve a blood draw or a shot, so she is happy about that. But the worst part is getting the thick white barium out of her after the study. This one will be different because I cannot be in the room with her for this one, pregnancy and radiation do not mix. We have talked about it a bunch last night and today so I think it will be ok.

We call the UGI cave that they put you in a camera. So we bring our camera, Ellie takes pictures of the camera, the room, the tecs and us and then the "camera" takes pictures of her belly. It worked pretty well last year, so we should be good this year. Knock on wood. We got a KUB x-ray last week and Ellie ran into the room, stepped on the lever to lower the table, hopped on, laid down, pulled up her shirt, lowered her pants to expose her belly and yelled "say cheese!" . You should have seen the technician's face.

Now of course through all this Ellie has been her normal bubbly self. She is still going to pre-school, up to Maine for her grandfather's 70's birthday, to ballet, to swimming lessons and building the most awesome Lego castles. She doesn't like the vomiting part, but she has over all been pretty good.

Both Gib and I are not sure it is an obstruction that is causing the problems but we seem to have looked at everything else. I really don't want to see one today, but on the other hand I want answers as to what is wrong. Again we are heading into summer with GI issues. We lost most of our summer last year to GI issues and surgeries. I would love it if we could not have that happen again. I would like to worry about what we are going to do for fun and how we are going to fit it all in, not about being inpatient again. And I really don't want to have to tell Ellie that she needs another surgery, she remembers too much from last summer.

Sorry, no pictures on this post. I will post more later. And we will update you on anything that they find during the study.

Inspiration

I have been helping my friend Dave write his blog about training for the Boston Half Marathon. What makes this is so incredible is that he only has 20cm of Small bowel. He works full time, is an avid advocate for others in his situation, and oh yeah.... he is going to run 13.1 miles this June.

I am perfectly healthy and that task seems daunting. But it has been really fun helping Dave and to see his progress. But I have to say the best part is seeing his determination and refusal to just sit back and be an observer.

Whenever I get sad about the things Ellie might not be able to do when she is older, I just check out Dave's blog and I feel much better.

Thanks Dave for the inspiration.

Dave's Blog: No Guts, All the Glory

4 YEARS OLD!!

Happy 4th birthday Ellie!!

I can't believe that she is 4. That means she is much closer to being 5 and the next thing I know she will be 10 and then 20 and......

I am so not ready for my baby girl to grow up.

We are having a quiet celebration here tonight and then a blow out birthday party with her preschool class. We have rented a bounce house and are ready for the madness.

We check the weather forecast about a million times a day, and so far we have sun. So keep your fingers crossed for sun!!!

Ellie has requested cupcakes again this year, so I will be baking all afternoon. She is decorating cookies with her class today at school. It is amazing to me how good dairy free, nut free, egg free cookies and cupcakes can taste.

#2

We got our first look at #2 today. The high end ultrasound was way better than the one that the previous OB used.

Maybe that's why they missed the diagnosis completely! Either that or they just weren't very good.

#2 looks great, and is quite active even though not big enough for Abby to feel the activity.

We will miss you Gus

We had to say goodbye to the Wonder dog yesterday. He was great and we will miss him.

Drumroll, Please.

Ellie has some breaking news that she would like to share:

http://www.youtube.com/watch?v=bW40R-_iQrw

Swimming

This winter Ellie started swimming lessons at our local YMCA.

How, you might ask, is the same girl that didn't take baths is now swimming at the Y?

The answer lies somewhere in the land of technology, calculated risk and a healthy dose of normalcy.

The technological side came with our fine-tuning of a way to keep Ellie's central line cap and dressing dry even in a pool. We started experimenting last summer in Abby's sister's pool and had some miserable failures but since we have gotten much better and have a waterproof system that works very well.

It starts with a piece of Press n' Seal from the supermarket. We wrap that around her cap and press it to seal it. Water against the cap is the big risk for infections and s it does sealing food in your fridge.

Once the cap is sealed, we take a piece of tegaderm, a very sticky, waterproof film that comes from the medical supply company and cover her whole line, dressing and cap under a canopy of plastic.

Voila, we are waterproof!

We think that the biggest thing is that now Ellie's chest is finally big enough to fit a sheet of tegaderm onto her chest without any folds. Folds are bad and let water in. That isn't to say that the solution is fool-proof and we are quick to come home and change her dressing and cap before her next IV infusion but it reduces the risk and lets us get her doing things that other almost-four-year-old kids do.

It was time get her wet and this does the trick nicely even if Abby and I both keep personal 72 hour clocks after she gets wet to watch for central line infections.

We can now focus on getting her to let go of the pool wall by summer.

Long, skinny, and strong? Ballet!

Pay no attention to the lumpy things under my leotard...

3-4 year old ballet started last week and Ellie loves everything about it. Everything except the short nap that comes on ballet days. She gets to dress up, play with other little girls and then comes home to 'practice'. Excellent.

It is fantastic winter fun in a year with no snow (really), especially when our house is in epic shambles right now after the asbestos team spent the day here on Wednesday.

Reconstruction starts next week...

Not so bad...

Yes, it has been a crappy month, but things aren't all bad:

At least the dinosaurs aren't attacking...

Just a spoon full of sugar......

The title of this post is in honor of Ellie's new addiction to Mary Poppins. A pretty good addiction to have if you ask me.

Sorry it has been so long since we have posted. Ellie is doing well but we have had a doozy of a month. I am going to do the list in bullet form just to be short and sweet.

• Gus, the wonder dog, starts coughing
• Fridge died, dead.
• Our nurse who we can't live with out, called out for almost 3 weeks. (She had some serious GI issues that are getting much better.) And we did not get a replacement for that time.
• New fridge arrived, got installed.
• Fridge installer broke pipe in wall.
• Rain in basement, puddles on kitchen floor.
• Damaged by flood and removed:

1. Carpet in basement
2. Ceiling in basement
3. Bottom 4 feet of basement walls
4. Laundry room floor
5. Storage room floor
6. Kitchen floor, this means they removed everything in the kitchen: dishwasher, sink, stove, cabinets and fridge.

• OH WAIT!!! That kitchen floor has asbestos in it......
• Now we have no kitchen until Feb 10th when the asbestos removal team arrives. Then we can start rebuilding.

You think that sounds bad? Here is real kicker

• Gus's cough is lung cancer. He only has months to live.

Sorry to be so sarcastic, but I have to laugh about it or else I will start crying again. Ellie has been really into Gus over the past half year. He sleeps at the foot of her bed (next to her TPN backpack, our TPN team just cringed.) Her favorite way to watch TV is snuggling with Gus on the couch. We are struggling with how we are going to explain the next few months to Ellie.

Gib and I have been afraid to talk about how well Ellie is doing for fear that will go to pot too. You know how they say bad things happen in threes? Well we are working on sixes and sevens and have been walking on egg shells waiting to see what else will happen.

Seriously Ellie has been doing well. We are still on 4 nights of TPN/Omegaven. At clinic two weeks ago they said she grew 2 inches but gained no weight. So, she is now on the weight gainer diet. We upped the calories in her Elecare and we are now kicking up the good fats in her diet.

We were taken aback this past month because Ellie first off is potty trained! Not at night, come on.. she gets a liter of fluid every night. But we still collect her urine and stool in a hat in the toilet so we can gage how her hydration is doing and better yet how her stools are looking. But starting at the beginning of the month we started to see honest "logs" when Ellie pooped.

Now, if "logs" don't sound exciting to you, then you are not the parent of a short gut kid. It was our first log in over 3 years. She also started pooping only once or twice a day. We were happy at first and then freaked out. Is she dehydrated? Overgrown? What could it be?

They laughed at us a little bit at clinic and reassured us that is was just a well functioning colon. WHOA. Mind Blowing. IT WORKS!! So, it took 3 years, we are not going to complain.

So now we fatten her up and get her off of TPN. I hope. Knock on wood, cross your finger, sacrifice a goat, do a dance around a fire, do what ever you do for good luck and send it our way. We need it.

I'm off to snuggle with my dog.