Wednesday, December 31, 2008

Skinny New Years

It has been a month off of TPN. I would love to say we are doing great and everything is pointing towards another month off, but I can't. Oh, what a month. If I had known what this month was going to be like, I would have thought twice about coming off of TPN.

So far we had 3 days of high output that settled down only to be followed by 3 days with no food (NPO) for her bowel study. Which was not fun, but hopefully we will get good results. We got home and were starting to recover from the study when we got hit with a 5 day stomach bug. Which also resulted 6 really fun hours in the ER, blood samples (everything looked good) and stool samples (She tested negative for all the big bad stomach bugs). That was a week and a half ago and she is still only able to handle a half Pedialyte and half elecare mix for her G-tube feeds. And to end the month with a bang, last night she just came down with a doozy of a head and chest cold. Good times, good times.

I am ashamed to say that this month I actually missed TPN. In the past when we had more than 2 weeks when she wasn't able to eat as much as she should, I didn't panic knowing that the TPN/Omegaven would pick up the slack. But that isn't the case any more. Now if she doesn't eat, can't eat or does not tolerate her food; she doesn't get what she needs and that meas weight loss.

We have gone from gaining a pound a month to losing a pound. She is skinny. The pants that were tight around her waist last month are now falling off. It is kinda heart breaking. I know that recovering from an invasive study, stomach bug and cold will take a while and that I should be patient and not jump to any conclusions about what this weight loss means. But it is hard to not get nervous when her clothes look like they are hanging on her.

The worst part is that I know that if this month had been a normal one, she would be doing great. So now we just wait for her to recover from this cold and then wait for her to start gaining weight again.

On the up side, she is looking great! She is charming everyone's socks off up here in Maine and up to her same old tricks. She is very chatty and loves to have long talks, and loves to play hide and seek. Her new favorite obsession is counting all 14 steps of the stair case going up and down each time. She is having a blast playing with her cousins and her grand parents.

Gib and I are looking forward to new year with the possibility of some weight gain, no TPN forever, a reconnection surgery, and Ellie starting pre-school. We wish you all a very happy New Years.

I leave you with a video of Ellie unwrapping her favorite Christmas present.

video

Happy New Years!!

Friday, December 26, 2008

Merry Christmas

The Official 2008 Ellie Brogan Christmas Card Photo

My goodness what a week we have had. It started with a Sunday trip to Children's for cultures and bloodwork (all negative so far), moved quickly into pre Christmas fun at home with a surpisingly chipper little girl.

The holiday adventure moved into phase II yesterdaywhen we headed up the road to Maine for the week to let Ellie and here four cousins in Freeport play for a while. This was the same plan that we had last year that was changed on the road when we heard of a mysterious stomach bug that was making the rounds so we are preparing to go with an understanding that we could be amending our itinerary at any time. Such is life with Gut Girl.

Not a whole lot of time to post much but here are some photos from the week leading up to Christmas. Things are good for now and we are eagerly anticipating the results from the manometry study.


Santa on a Firetruck. a tradition in our town since 1946. At least according to the sign on his sleigh.

Christmas Cookies.


A trampoline for a 2 year old? What could possibly go wrong?

Trampolines make good present opening platforms, too.

Let's play a game!


Mmmm. Ice cream. just a few licks.

Sunday, December 21, 2008

Almost three days

That's how long we lasted this time.

we came home from Children's on Thursday afternoon and made it to Sunday lunch before we had to go back.

Ellie recovered from her study quite well and was raring to go on Friday and Saturday in the first real snow of the year.

We even broke open the gingerbread house and managed to decrate the whole thing without a battle over not eating the candy:


The one thing that we noticed is that the girl who took a suppository to poop before her study was now pooping freely after the study snaked three tubes into her bowels.

We chalked it up to good luck and figured that it would pass by Friday. It slowed a bit Friday but by Saturday we had 8 poops and by Sunday noon we had another 6. That borders on what the doctors call 'stooling out' and we gave a call down the road. Ellie was and is in great spirits (except for her poor bum) but that kind of activity set off alarms for all off us.

As luck would have it the surgeon on-call this weekend was none other that Ellie's surgeon, Dr. Jennings who asked us to come in to the ER for bloodwork (to check her electrolytes) and a couple of stool samples because as he put it rotavirus is every where at Children's these days. So off we went at 35 MPH down the Mass Pike through day three of a very long snowstorn that made me shovel four times....

By 5 we had clean bloodwork results, a sample of ostomy liquid was sent off for the tests and we were heading tothe car when Ellie told us: 'I am pooping, now'. So back they went to give a stool sample and we headed back down and even worse MassPike to get home.

It will take a day or two to get results and if it is rotavirus, we may have a significant change in our holiday plans in the works. We are hping to avoid a Children's Christmas.

Ellie is very excited about Santa.

But there isn't anyhting we can do about that one. we'll wait and see.

Wednesday, December 17, 2008

Back up and at 'em

At 5 PM tonight Ellie's adventure with manometry finally came to an end with a successfully completed full test and 10 hours of squiggles for the doctors to look at, analyze and interpret. We should have results in a week or two but the doctors very careful not to give us any preliminary results in such a technical test.

The reason is that the test produced a lot of these computer records (10 hours worth): Each line is a separate sensor in a manometry catheter. The top 5 or 6 are her stomach, the next 5-6 are her small bowel and the rest are her colon. Although these are lines are relatively flat, we watched as she finally pooped out the test solution late this afternoon and can tell you that the squiggles really dance when her bowels move.

Whether they are doing the right dance is the big question.

A little after 5 the doctor came in, removed the catheters from her colon, ostomy and g-tube hole, replaced the g-tube button with a fresh new mic-key button and we were done.

Ellie was ready for a walk around the floor:
By about 6:45 we had Ellie back in her bed and Abby was doing her best to keep Ellie from doing 'exercises' in her bed when I left:

Post Test, Wednesday 6:30 PM

She had Cheerios and elecare for dinner. We will come home tomorrow morning and spend the next day or so feeling our way along and trying get her back up to full meals as quickly as possible and hope that the little girl that we brought into pre-op yesterday is back in full force.

They sure look like the same kid:

Pre-Op, Tuesday, 1:00 PM

Getting better all the time

Things have settled down significantly since this morning and we are nearing the end of her 12-hour study.

Since lunch time Ellie has started to eat, shown good signs as food moves through her gut and has finally settled in for a nap.

Because of her vomiting it looks like she will need to stay another night just to make sure that things are working. We had anticipated this and Abby even packed for two nights.

We haven't heard results yet and probably won't for some time so we will wait to give the verdict until the pros give us the official opinion.

We have no idea when that will be.

So much for the smooth sailing

Well it isn't like we weren't warned about the down sides of a manometry study. And just to keep the reputation up, Ellie's gut has decided that it doesn't like having extra tubes in it and has started to vomit for us. IT started last night with some small spit ups and has progressed overnight to a full-on Exorcist/Stand By Me barf-o-rama by 9 this morning.





Abby is on her third set of borrowed scrubs. If we could only get Ellie to stop watching TV while she barfs we would be a lot better but I guess those Brogan genes are overpowering. Oooh, magic picture box......

This is very curious to us and to the GI/motility doctor but he las learned quickly that Ellie's gut is far from typical and had a few 'oh, really' moments this mrong when we told him new things about her history.

The thought right now is that the catheters that are in her bowels are blocking her bowels and things are backing up until she gets full and decides to unleash a wave of green bilious vomit on us. The color and barfing are eerily similar to the night she was born and all of those months where things were piling up in her dilated small bowel.

The doctor is concerned about this and may pull the plug on the test early if things don't get better soon. We hope that we can peel away tubes on by one to keep the colonic test, which is the real goal of this study for us.

More to come. This fancy wing of Children's has a laptop in each room so we can post from here. The hospital even updated their internet security to allow blogger to work. Finally.

Tuesday, December 16, 2008

Day 1 Update

All is well at Children's.

In fact, all is better than we thought going into the day.

Everything went as we expected and at about 5 this afternoon we were summoned into the recovery room by the GI specialist who is running Ellie's studies this week. He came to find us and tell us that she wanted her mom. Now.

So we went in to the recovery room and got her settled and learned the following things from the GI/bowel motility doctor in his words:

'She has most of her colon'. No kidding. the same kids who we assumed had only about 70% of her colon now has most of her colon. Considering that in some cases the colon can take on some of the function of her missing small bowel, this is great news and makes us even more optimistic about her gut adaptation.

'Her bowel looks good' Ah, words that we love to hear. Abby and I had tried to avoid thinking about what the doctor would see on the inside but hearing pink and good looking is always a good thing. That doesn't mean that it is working perfectly but on appearance it seems that there aren't any areas of dead or sick bowel in the length of her remaining small bowel.

'Some twists and turns at the top of her colon' Maybe the answer to the mystery of Ellie's lazy pooping. If there are kinks or turns or some other strange configuration of her colon up abouve, it might slow down the progression of stool through her colon.

All of these good words made our day but the proof will be tomorrow when the second half of her test gets under way. In addition to scoping her bowel the doctor left a bunch of new tubes in Ellie that will measure her bowel function tomorrow morning. Right now she has a catheter tube in the lower end of her colon, a catheter tube in her ostomy going up into her small bowel, a catheter going in her g-tube hole going through her stomach to her small bowel, a tube in her g-tube hole that works as a vent and a feeding port, and a central line. A helluva lot of tubes for little girl but she is still pretty dopey from the anesthesia so she has been pretty good about it so far.

Tomorrow's tests will take a long time and begin before breakfast for most people. I have to go to bed to get GUs fed and happy before going in for a 6AM start time.

We hope to have some new answers by this time tomorrow and who knows, maybe a plan for the next surgical step....

Monday, December 15, 2008

Let the games begin

This afternoon marked the beginning of a very long few days with a very different girl than the last time we had to take her in for bowel studies.

No matter how old she is, the doctors need a clear bowel to look around so we have to take steps to clean everything out before they go a lookin'. So at 1 this afternoon Ellie had a good lunch with Karlene. Noodles, asparagus and chunks of cold chicken breast. They had a picnic in our living room as a special treat with ellie doing gymnastics between courses.

I swear Ellie knew something was up because, by our estimate that is it for her until Wednesday afternoon. She is off of solid food, off of formula and onto pedialyte until tomorrow morning. Then it is nothing for a long while until this whole thing is over on Wednesday and we have to begin the task of getting her back on formula and food.

To add insult to injury we also had to give her an enema tonight and another in the morning to help clean things out. What is is that the wode-mouthed frog says? Ooooh.

Poor little girl.

We will see how she does tomorrow morning when she wakes up and will likely be hungry. We will try and distract her by doing fun things until 11 when we leave for the hospital but after a while she will want food and tell us, like she did tonight: 'I hungry. eat dinner.'

It is especially tough to deny her food when we have worked so hard to get her to eat over the past few years. I sincerely hope that this isn't an event than sets us back months on her feeding skills and drive.

Who knows we may take the plastic off of the candy cane by Christmas. All she wants is one lick. Really.

The bags of distraction are packed and we are ready to set up camp again at CHB. I wonder what they would think if we brought the dress-up clothes to make Ellie fancy:
If we can simply avoid Au Bon Pain. I hate that place and their lousy coffee. It tastes like hospital to me.

We will be laptop-less for this adventure so updates will come late tomorrow night when I get home.

Who knows, we may have lots of good news to show for the hard work.

Wednesday, December 10, 2008

Manometry

Next week we take the next step in the mystery of Ellie's Bowel when we head to Children's for a few days of tests. Ideally the tests will show us what the inside of her bowels look like, how well her gut adaptation is going physiologically, and also how well her bowels are working.

She will have two studies done over the course of two days. On Tuesday afternoon, after being food and formula-free since midnight (NPO/NPG as they call it) she will have a endoscopy of her bowels. Surprisingly, this simple look inside hasn't happened yet in her colon, we are hoping it will tell us some things about what is going on inside. She will be under general anesthesia for this and the plan is to scope her from the top down, from the bottom up and maybe from the middle, as well.

Then after the 'scope they will snake a tube from her stomach, all the way through her small and large bowel or maybe one from above and one from below. This setup will be left in over night and then first thing on Wednesday morning, Ellie will have an intestinal manometry study done. The tube that is in her intestines is connected to a small pump, which pushes water slowly through the tube and into intestine. As the intestine contracts and tightens around the tube, it stops water flow in the small holes in the tube. Each hole has a pressure sensor (manometer) attached to it and the whole thing is attached to a fancy computer so each contraction is recorded and measured and showing a pattern of activity. This study which takes eight hours of sitting in a bed attached to a fancy machine will show us how well the muscles in her bowel contract, whether the waves are coordinated, and also if the small and large bowels are in sync with one another or dancing to separate tunes.

All of these tests will hopefully answer the question of why Ellie still needs help to poop every day. If there is an obstruction or a 'pseudo-obstruction' that slows things down we could work to fix that. A lot of kids with multiple short bowel surgeries will develop scar tissue called adhesions that can constrict or kink the bowels.

The other thing that we hope to learn is whether things are coordinated enough to think about reconnecting her bowels and getting rid of her ostomy. Our concern is if we connect her small bowel to a large bowel that is blocked or partially blocked it will create a log jam and possible re-dilate her bowel, something that we have used an ostomy to fix for more than two years.

This week we are moving towards a total lockdown with Ellie since her much-anticipated intestinal studies are scheduled for next week and we had to delay this same study last spring because of a relatively simple GI bug. It would be really frustrating to get this close again and have to postpone it because of a cold or a stomach bug so we are keeping a tight hold on the reigns until next week. They do very few of these studies each week and a delay might mean another six months.

So no gymnastics this week, except in the living room.

The plan is to go in around lunchtime on Tuesday and be home for dinner on Wednesday but all things considered, we are planning for the possibility/likliehood of staying Wednesday night as well. Something about pumping a lot of water into her bowel sounds like it may be tough to bounce back from and an extra night at the Inn may be needed.

So we are collecting our DVD's for the 8 hour test to keep us all entertained and debating the old crib/cage versus a big girl hospital bed. Thankfully Ellie's taste in movies has evolved from the Wiggles and Barney to more watchable movies like Toy Story and Monsters, Inc. We will still bring Kipper along for the ride. Somehow his accent is an anesthetic for all of us.
It seems afte the pre-op appointment on Friday that the only thing to resolve how we are going to tear Ellie away from the Christmas tree and her collection of animatronic snowmen that came from her great grandmother:

Monday, December 08, 2008

So far, so good


Well today marks a week of the great Ellie Brogan TPN experiment. Since we have been told to look at the weekly trends in results rather than the day-to-day ups and downs that may swing depending on small things, here are the notes for the first week.

She is feeling great and doesn't seem to notice the difference between TPN and hydration fluid.
She still has lots of energy, is happy and, if anything is a bit hungrier in the morning than she was in the past but that may be our imagination. It is always great to hear her tell us that she is hungry.

She is keeping her weight up. This morning she weighed in at almost exactly where she was a week ago. That counts as a win in my book.

Fish oil is agreeing with her. We have started to give her liquid fish oil through her g-tube to replace those great omega-3's that she isn't getting from omegaven anaymore. The antiinflammatory properties along with the other great things that omega-3's have done for her are too good to pass up so we have done our homework and have a bottle of lemon-scented fish oil that replaces some of the oils that she was getting. I say some because I did the math (yes, I can still do stoichiometry from chemistry) and she would need a huge amount of liquid oil, about 30 ml or one ounce per day, to replace the dense good oils in her omegaven. We're not that brave and are pretty sure that she will dump that right out of her ostomy so we are giving her about half of that and will add it as we go.

We won't know if she is missing the other parts of TPN like vitamins and proteins for a while and will have those checked next week when we go in for her stay at Childrens for her tests.

It will be like clinic. With a bed.

So we keep on moving, eating and watching Ellie do her tricks.

Ellie is really enjoying Christmas and thinks that our tree and some well-timed snow is the greatest thing in the world. Even though we only got 1/2 an inch yesterday, we made a snowman (all 8 inches of it) and threw snowballs. The tree is up, the animatronic snowmen are singing and it is off to the races.