Sunday, December 30, 2007
Friday, December 28, 2007
This week was another chapter in the long series of last minute adventures of Gut Girl.
We had a very nice low-key Christmas. We took Ellie to her (and her daddy's) first Christmas church service on the 24th, read Ellie Twas the Night Before Christmas and had a nice day opening some presents (even though Ellie had no idea why there were so many toys in our living room).
Ellie is most fond of her new potty even though she doesn't quite get it. She (and her mom) were so excited about it that they had to try it out in the living room:
And the bathroom:
This year was a nice prelude to what I expect will be a full-on Christmas with an almost-three-year old next year. Baby steps.
Our original plan was to take off on Wednesday to spend a week with my parents in Maine and let Ellie have a nice long stretch with her cousins instead of the mad dash visits that we usually do.
Wednesday morning we spent about three hours getting ready with a week's worth of stuff to take the Infusion Operation on the road. List after list of stuff was packed up and loaded, tetris-style, into the car.
At about noon we loaded Ellie and Gus in and made our way to Children's to pick up some ostomy supplies to get us through until the delivery comes next week. They are very good to us when we run into a snag between orders especially when Ellie's ostomy is misbehaving the way it has over the last two months.
Out comes Abby from the Children's revolving door and my cell phone rings:
'Gib it's mom. I have a cold, your sister has a doozie and the kids all have runny noses. Do you still think that you should come?'
And with that our plans changed and we headed home. We will get to Maine as soon as everyone is healthy but with another surgery in the works for the sometime in the next few weeks (we hope) we don't want to delay it because of an avoidable cold.
Total elapsed trip: 1 hour 12 minutes, including a stop for a sandwich on the way home. A big adventure.
We spent yesterday and today playing around the house:
but quickly learned that we would go batty if we stayed here for the next week. I don't work again until the 7th of January so we need to go somewhere for some new fun before we start in on the long stretch of winter. so today made plans for a short trip to Vermont to stay with Abby's brother-in-law's family at their house in northern Vermont.
Maine, Vermont it's all snowy so the bags stayed packed and we will load them up again tomorrow for a two night visit.
Ellie's teenage cousin will be there and Ellie adores her so we should be in good shape for a few days.
Maybe Ellie will get her first ride on a sled....
Monday, December 24, 2007
It is hard to believe that this is the same little boy that we met in August of 2006.
Here is a link to watch a great video of Christian's re-birthday party.
You can see for yourself how great he looks. That video warms my heart and makes a bit choked up every time I watch it. Congratulation's to Christian for one great year and many many more to come and to his amazing parents and their big strong hearts.
Everyone please, please become organ and tissue donor today, as your holiday gift to the many little kids in the world like Christian. If you are already a donor, thank you, thank you, thank you.
Friday, December 21, 2007
This was our first time doing day surgery and we were scheduled for a 1 PM slot on the operating room (endoscopy involves anesthesia so it happens in the OR even though there isn't any cutting). We followed the rules and stopped her Elecare at midnight and gave her just a tiny bit of pedialyte to get through the morning before arriving at Children's around 11:30 as they had asked us to be there 90 minutes ahead of time for pre-op activities.
1 o'clock came and went. Ellie was happy as could be even though her belly was empty and she was confined to a small space.
2 o' clock came and went. Happy Ellie watched some TV and had great fun changing channels on the tiny TV at the bedside.
3 o' clock we got an update that the 'case' ahead of us in the OR was running over because of complications and that is shouldn't be that much longer. Ellie continued to be an angel while Abby and I got progressively more hungry because of course with Ellie fasting we couldn't eat either. But how could I complain that someone else's kids surgery was complicated? All I could think was how much it must suck to have your kid in the OR for too long.....
Finally as the Pre-Op room was getting very lonely, Ellie was wheeled in to the OR and put under around 4:30.
At about 6 we met with ther GI doctor who did the endoscopy and he told us that there wasn't a whole lot to report. From above, things look normal- esophagus, stomach, etc. When her went in through her ostomy things looked good as well without any signs of disease,infection or injury. What was interesting was that even with a the best scope that they have, he couldn't find the 'chimney' that connects her colon to her small bowel near her ostomy until he was almost done and investigated a tiny wrinkle in her small bowel where her found the opening to her colon. No wonder nothing is going down and a lot is coming out her ostomy- the hole for things to go down has almost closed as her small bowel has come down in diameter. Just what we had suspected to be the case her ostomy did its job but in the course of bringing down the size of her bowel it had changed the original set up.
So now we wait to hear what Dr. Jennings thinks and make a plan for the next step. He was in the OR today watching the whole thing so he already knows what is going on. There is little doubt that her anastomosis (connection site) needs adjustment but the question is what adjustment do we do and how does that play into the overall plan. We will probably talk next week about where to go from here.
Ellie recovered nicely from her anesthesia after an hour or so of watching her new pink DVD player in the recovery room. Somehow Barney made her feel much better than either Abby or I could. Great. A damed purple dinosaur is better than mom or dad.....
We hooked her up to her nights infusion while we were still int he recovery room and headed home. Ellie was asleep in her own crib by 9 PM.
We are expecting a few bumpy days as she recovers from this 'minimally invasive' day but overall we expect her to bounce back pretty quickly.
If her blowing kisses and giving high fives to the nurses as we left the recovery room is any indication we should be just fine..
Wednesday, December 19, 2007
Now, we wait until Friday's scoping. We have been warned that Friday procedures can take awhile to happen even though you have an appointment. Great. We will just come ready to stay for a while and bring the PN to hook up if we need to. This is an outfit of Ellie's own creation. Fairy wings + baby legs worn on the arms.
Tuesday, December 18, 2007
Ellie’s output out of her ostomy is still high. It has been high since before Halloween. Antibiotics for bacterial overgrowth didn't work and she is showing no signs of yeast over growth. One other possible cause of her high output might be that food is no longer able to go down her colon and instead everything is going out her ostomy. We assumed that she was not pooping any more because she was dehydrated. But it could be that it is the cause not the effect. The connection between the small and large bowel could possible have gotten smaller. Or that the layout of her bowel has changed. It could be that the problem is mechanical not medical.
So last Wednesday Ellie had a contrast study done on her colon to see if there were any kinks or narrowings of her colon. Everything looked great with no problem areas. They said that she had most of her colon, and that it looked great. Nice and big and the same size as her small bowel, a big change from the micro colon she used to have. Good news, but still no answer to our problem.
So tomorrow we head in for a contrast study of her ostomy with Dr. Jennings. Hopefully we will get a better look at the connection between the two bowels. Then on Friday we go in for day surgery so that Ellie can have her bowels scoped. They will pass a camera down from above so they can take a look at her small bowel. Hopefully they will be able to take a sample of the liquid at that time to test for any over growth. Just to cover all our bases. Then they will take a look at her colon.
So hopefully by this weekend we might have a better idea of what we are dealing with. Or not. But we have to try. She still looks great doing great, but she still needs extra hydration every three days.
Okay, after all that, if you looked at Ellie you would never know that anything is out of whack. She has taken to singing. Sometimes you can recognize the song and other times you just have to sing along with the babble. Also, Sadly Gib and I have also realized that Ellie has better rhythm and is a better dancer than either of us. This can be seen in the video clip below.
I was waiting for her to start twirling the swifter around like a baton. And those are baby legs that she has pushed down in a very Flash Dance style.
Other good news, the 22nd will be Ellie's friend Christian's one year anniversary of his liver and small bowel transplant. He looks fantastic and is doing very well.
Tuesday, December 11, 2007
It seems like years ago that we were there every day and virtually living on the eighth floor of the hospital. It also seems like years ago since Ellie was the tiny baby that we brought home with us.
Seeing today's dancing running and jumping Ellie and knowing how comfortable we would be with taking care of her would have made leaving not nearly as scary. Hopefully someone else will see what fun she is right now and realize that life at home with tubes isn't all that hard and that a baby with tubes can be, as they say, 'typical' even with all of the medical obstacles.
Christmas last year was great with a house full of family on hand to spend Christmas with us and Ellie with her new pumps. This year since Ellie knows a little bit more about what is going on (she says Ho Ho Ho when she sees Santa) we will have some time at home with Ellie and her favorite tree and then get adventurous and take our show on the road to visit family.
Todays video is of Ellie opening the new animated snowman that her great grandmother sent to her this week. This is her first time seeing the snowman:
Ellie is definitely a better dancer than either of her parents.
Thursday, December 06, 2007
Ellie had her scheduled Short Bowel clinic appointment at Children’s today. When things are going well we have gone two months or more between clinic visits but with her ostomy misbehaving they wanted to see her after just one month this time.
The overall results from our visit is that everyone is still very pleased with her growth and development which as continued despite her ostomy issues over the last 4-6 weeks. Her weight and length are still right in the middle of the growth curves for her age which is very exciting for us.
Clinic is a series of meetings with different specialists that make up the Short Bowel Program (or Center for Advanced Intestinal Rehabilitation, CAIR as it is now known).
Today we met with six specialists. Everyone spent their time with us thinking and talking about why her ostomy is losing fluids like it is and thinking about a solution. It was like being in an episode of House with giggles.
Here’s what we know-Since we ran Ellie through a week of an antibiotic called Flagyl last week, we are pretty sure that it isn’t a bacterial infection. Since she doesn’t have any signs of a yeast infection like a rash, we are pretty sure that it isn’t yeast.
Which leaves her plumbing as the culprit.
The consensus among her surgeon and the short bowel team is that when Ellie’s ostomy was put in we wanted her bowel to shrink and get stronger while allowing some food to go down the ‘chimney’ to her colon to let her poop. All evidence so far shows that her small bowel is much smaller and stronger meaning that we have accomplished that goal.
Unfortunately this shrinking has changed the connection between her small bowel and colon. We think that the chimney has gotten smaller which makes it harder for food to go down. If all or most of that food that used to go down to become a nice poop for us is now going over the top of the chimney and out her ostomy, it would explain the high outputs and lack of poop very nicely.
To check out this theory and also rule out any blockages or other complications we are going to run another series of tests in the coming weeks to watch things move through and then maybe run an endoscope through her bowel to look around.
So we wait to schedule a set of tests and continue to watch Ellie very carefully with new instructions for rehydration that will make our lives a lot easier. The TPN guru told us that we can run her rehydration fluid (5% dextrose) as fast as we want which means that we can get all of Ellie’s fluids into her during her afternoon nap and avoid time attached to the IV pole.
Running kids and IV poles don't mix very well.
Monday, December 03, 2007
On the gut front, she is still having the highest ostomy outputs that we have ever seen, which is a concern for us but not an overwhelming concern since Ellie feels great and doesn't miss a beat even when she is a running half a quart low on the fluids. This does mean that we have too hook her up to an IV every now and then when her numbers are really out of whack and let her have some fluids while she has a nap. A few hours of fluid and the dark circles under her eyes go away and she has very rosy cheeks again.
We're not sure why her output is so high and there are lots of theories. We have just finished seven days of Flagyl, an antibiotic to kill any bugs that might have carpeted her gut. She may also have a yeast infection. She may also have some kind of an allergy. She might just be working with a fully functional bit of bowel that's job is to secrete large amounts of fluids into her bowel (that would be reabsorbed in her colon if it were fully attached.) Take your pick.
The bright side is that she is very happy and giggles all day long while she does every dance that the Wiggles teach her. Stand on one foot and shake your hands? Oh yeah, she's got that one down.
We are getting ready for Christmas and took Ellie to the tree farm on Sunday to get a tree. she thought that the walk in the field was great fun : though she wasn't quite sure what to make of a running nose in the cold.
We will put the tree up in the next day or so and let her loose with the more sturdy decorations.
Even though things aren't super smooth on the medical front, we are having lots of fun these days and are looking forward to more fun:
Saturday, November 24, 2007
One person that we are especially thankful for is Ellie's wonderful nurse, Karlene. Ellie absolutely adores Karlene and, even though Karlene has three kids of her own, she treats Ellie like one of her own. She combines being a great nurse with amazing experience with young kids and has been great for Ellie.
Karlene has also been great for Abby and I. With Karlene we can take a deep breath and let a professional take care of Ellie knowing that all of her medical needs will be met and Ellie will be very happy. Considering the complexity of Ellie's care and our concern for her plumbing, this is no small feat.
We truly appreciate everything that Karlene does for us and for Ellie.
Ellie shows her gratitude with snowballs:
Tuesday, November 20, 2007
It also marks a full year of bag changes for Gib and I. It is still no fun to do them, but we our choreography is well worked out by now and only takes 5 minutes if we are together.
Needless to say, November 20th this year was lots more fun than surgery day a year ago.
Winter showed up today with the first snow fall. Ellie had a good time chasing Gus around the yard and even got a taste of her first snow ball. She liked it when Karlene and I threw them at each other but, she just wanted to eat hers. Speaking of eating…. Elle is acting great and if we didn’t watch her numbers so closely we would have no idea something was wrong. Ellie still isn’t in balance with her numbers.
The current theory is that with one of the colds that she had in the end of October she also got a stomach bug. This is the leading theory because the stool cultures did not grow bacteria or yeast. So a GI virus is now the likely culprit and instead of vomiting she had high output.
Apparently when you have a GI bug you lose the lining of your intestines and that is why you get so sick and have to eat such bland foods. i.e. chicken noodle soup. But with short gut kids this lining is 2 to 3 times thicker than normal kids, so when it comes time to re-grow the lining after a stomach bug, it can take 6 weeks. We figure that we are now in week number 3. Darn.
To help her intestines recover we decreased the rate on her milk pump from 29cc/hr to 24cc/hr. But this hasn’t solved the problem. So, tomorrow we talk to the GI team of the short bowel clinic and probably drop her milk rate much lower and take on a new night of TPN. During all of this she has not lost weight, but she has not gained any weight either.
The fact that we have to reduce Ellie’s feeds and back off on the oral foods is very frustrating because Ellie has just started to show a real interest in real food, not baby food. She will try almost anything we put in front of her and will eat most of it. I was excited that with Thanksgiving coming up she might actually eat some of the dinner. But now that isn’t an option.
So after all that, I have to reassure you that she is doing fine. My sister Emily is in town with her family so we have been out and about with them. And all this mess hasn’t slowed Ellie down one bit! She has had a blast playing with Charlie and Olivia. We went into Boston to the Children’s Museum and to visit Uncle Fred. We have also played in the snow and been to the park a million times.To Give you an idea of how high our crazy lady has climbed in the maze at the Children's museum, that is her Aunt Emily and Uncle Marcus below her.
Thursday, November 15, 2007
Tuesday, November 13, 2007
We got results back on her blood work after we got home this afternoon. Everything looked good. Which means that her kidneys are handling the fluid loss very well. This was surprising considering how much fluid she has lost in the past few days, but we aren't complaining. The results on her stool sample indicated that she was dumping fluid. This can be caused by a GI virus or by irritation due to overgrowth of bacteria or yeast.
There is a possibility that the stool culture will be able to tell us if there is overgrowth and which type. But overgrowth is very hard to diagnose. We will just have to see.
We are going to see how she does tomorrow and if her ostomy output is still high then we will try an oral anti-yeast drug. We are not expecting quick results, Dr. Jennings said that it can take 4-6 weeks for the bowels to recover. So for now we watch her numbers and keep things simple.
We will go back to the weight gainer diet, introducing new foods and start pugging her ostomy again when her output gets back to normal. Right now Ellie is in bed reading while Gib and I try to stay awake. It was a long day but we are all home and doing well.
Monday, November 12, 2007
Ellie's 'numbers' (urine out, ostomy output, stool in her diaper) have been creeping away from the very stable range that we have enjoyed for the last few months and are now raising some flags for us and her doctors. She is in great spirits and happy as can be but her numbers are a bit troubling for those of use that watch her charts like some folks watch the stock market.
Today her ostomy output went over 1000 ml for the day around 5 PM. Her normal range is around 400-500 ml per day and when it hit 1000 we got in touch with Dr. Jennings.
He didn't want us to go to the ER but we are leading off the day tomorrow in his office hours.
There are a lot of reasons that this could be happening. She could have a stomach bug. She could have another kind of infection, virus, or yeast. she could have an allergy to one of the foods that we have introduced. There may be something else going on.
Whatever it is we want to have her checked out and make sure that all of that fluid that is going out of her isn't screwing up her electrolytes.
This may win us a complimentary stay at Boston's finest hospital to get her back in line and maybe run some drugs through her. We have dusted off our 'Go Bag' of essentials to get us through a stay in the hospital. toothbrush, pajamas, clean clothes, stuff for Ellie to play with etc. To be honest we had gotten a bit complacent and unpacked the Go Bag a few months ago.
Never a dull moment.
We are both dreading taking Ellie back for a stay. She is a lot different today than when we left 11 months ago:
We are guessing that she won't really like being confined to the floor all that much.
The current Vegas line is 3-to-1 in favor of an overnight stay with an over/under of 2 nights.
I'll take the under if it's all the same to you.
Thursday, November 08, 2007
Check out the great onesies that these folks have put together for kids with tubes, equipment and other issues:
My favorite is: I can eat and sleep at the same time. Can you?
But I still think that the onesie that came from Abby's friends at the aquarium is best:
Friday, November 02, 2007
She gets to play with the water for a while and then we lay her down with her head over the sink to wash her hair. The towel around her middle gives us a good hand hold so we can stop her from going to far when she reaches into the water.
She has breakfast all over her face and a big snotty nose but I think she is still cute.
Wednesday, October 31, 2007
The pictures are a mix of the Halloween parade at the town hall on Monday and tonight.
This was her first Halloween outside of the hospital and I have to say this one was much more fun. But that is mainly because she is older. She really got the whole trick or treating thing. She was running from house to house right up to people's doors and ringing their doorbells.
She said "Hi" to all the kids and took way more than her share of candy. We let her suck the sour stuff off of a sour patch kid and that is all she got.
She had a great time, we(her uncle Fred and I) made it to about 8 houses and then she came back home to help answer the door. We took off her dress so she could eat dinner and this is what she wanted to wear for the rest of the night.There were a ton of trick or treaters out tonight and when we were out there were no cars. The police were all on bikes and would stop by and say hi to the kids. All in all it was a very good Halloween the only thing that would have made it better was Gib. Ellie went to bed around 9pm so hopefully she will sleep late tomorrow.
Monday, October 29, 2007
We had a good weekend and Ellie really enjoyed the rainy weather.
The only sad part of the visit was that the doctor said that because Ellie has caught a cold the past 2 times she has been to EI playgroup she has to drop out. There are just too many colds that go around in the winter for Ellie to be around other kids.
I really liked that Ellie got to spend time with other kids but I understand that it is just not worth the risk. I think it was just wishful thinking on my part to think that her immune system could handle it in the first place. So, we will try to plan more small play groups here and Karlene and I will just have to get really creative with her play time.
Not the good mouse part of Orlando but the 'Vegas without the vice' part near the enormous convention center. Lots of family friendly budget neon with nothing of any real value.
I am not very excited to go and even less excited to leave home that is just now starting to feel like we have been here forever. But I was asked to go and talk about ocean conservation to the SCUBA divers of the world so off I go to man a table, fake small talk with 100 people a day and eat lousy meals from a variety of chains.
I have asked Abby to post updates and pictures for me every day so the added bonus will be lots of fun pictures of Ellie for everyone, I hope.
On the plus side, for me at least, is that I get a four nights sleep away from the beeping pumps and scheduled tasks. I usually don't sleep well in hotels and will probably miss the beeps, sort of like the Shawshank Redemtion when Red can't live away from the noise of prison.
On another work note, I made in into the Globe this weekend.
Yep, that's my day job.
Friday, October 26, 2007
The result of this weight gain, is that she gets to continue eating like she is but she also gets another night of PN removed and replaced with D10. So, now she has 4 nights of PN and Omegaven (white gold) and 3 of D10. We tried this a month ago and she didn't gain any weight. But with her new weight gainer diet that is working on her and sadly me too, she should be okay.
The short bowel team was also very excited by her progress and how well she is handling it when we plug her ostomy. The results came back from the upper GI with large bowel follow through and everything still looks good. The report did mention that the bowel was very slightly more dilated than it was in March but much less than it was in October of 2006, before she had her ostomy. They also mentioned that there were no stagnant areas in the bowel. It was also noted that a transit time of 2 and half hours is good. It was very nice to read the report and to hear how excited the team was about the results.
We do like the Short Bowel team but we will wait a week and a half until we talk to Dr Jennings to see what the report really means and what our next step is from here. I do have to say that it was nice to go into clinic and have everyone be so excited by her progress.
All in all she is doing well with the ostomy. She is staying hydrated and continuing to grow, so if we have to keep the ostomy for a while, it would not a bad thing. Ellie handled the trip well and put on her magic show for the team. She takes a toy and hides it in her shirt or behind her and then says "where did it go?" (ok she doesn't say it with words but with hand gestures and shrugging of her shoulders and a "Hu") Then after a second or two she makes the toy reappear and says "TAH DAH." (this she actually does say)
She was very tired when we got home, but still put on a show for us as she settling in for sleep while Gib put together her PN, as you can see below.
Ellie with 3, yes 3 binkies in her mouth. Her eyes are closed because she is giggling too much to keep them open.
Monday, October 22, 2007
Ellie was her charming self for the staff in radiology and she had lot of X-ray pictures taken of her bowels. I asked the radiology tech for the running total of 'belly films' that Ellie has had so far and she couldn't tell me. I am guessing that it has to be pushing 100 so far. Oh her poor guts.
It has been a long time since we spent that much time at Children's and Ellie is a much different kid than she was the last time we made the rounds. She was especially fond of the garden in the middle of the hospital. the same garden that we took her for walks when she was tiny are now a lot more fun:
In the meantime we will appreciate our time away from the Longwood Bar and Grill (Children's). Today's trip made us both realize that when we go back we will have a much different little girl with us and our stay may not be as smooth as it was when Ellie was an infant.
Sunday, October 21, 2007
We get emails at least once a week from parents who are making the tough choices that we made just after Ellie was born and have been told more than once that families have even gone so far as printing out the whole thing to read during their time in the NICU.
It is really overwhelming for Abby and
Abby has an encyclopedic knowledge of these kids and can tell you right now how much bowel so and so has and what surgery they have had. But even though we know these kids remotely it is very rare that we have gotten the chance to meet these folks that we have emailed or even talked to on the phone.
Today took a weird twist on this. Oddly, it brought in my Mom and a baby with short bowel from Maine.
Thursday I got an email from a grandmother of a baby with short bowel from
Since this was a grandmother, I thought that she might benefit from my Mom’s view on things and sent her my parent’s phone number. Parent to parent is one thing but my mom can tell it from Gramma’s point of view as she sees it without any filters.
Tonight I got a call from my mom.
It turns out that the two grandmothers are exactly the same age and would have graduated from high school together if one had stayed in town longer and the other had come earlier. In the course of my mom doling out advice and opinion about Ellie’s story, it turns out they knew the same people in town and spent an hour and half having a phone reunion that was all started with two short bowel babies.
What is even stranger is that in the course of printing and reading Ellie’s blog, the other grandmother saw the picture of my grandmother holding Ellie last spring: And she recognized her recognized her. 55 some odd years after my grandmother moved away from
It still makes me queasy to think about those first few days. If sharing our girl makes it even a little bit easier to get through those crappy days then I am glad that we have her up there to show folks that short bowel is a lot better than you might imagine. In fact, tubes and all, it is quite a lot of fun.
Tuesday, October 16, 2007
When we moved we had to call the town Emergency Services to get Ellie on the emergency priority list for Wayland. Both Gib and I had some long talks with the emergency personnel to explain her status and medical history. The call would be made to the EMS if something happened and we needed help immediately, if there was too much traffic for us to drive her in to CHB ourselves (too much traffic in Boston?? Never!) or if Karlene needed to take her in to CHB and we were not home. Sadly Karlene is not permitted by her nursing company to drive Ellie anywhere, so she would have to call the EMS.
Ellie had a great time, and of course her slacker parents forgot to bring the camera, oops. But she did get this great hat that she then wore for most of the day. Both Gib and I struggled with the with the fact that all the other parents were there just to give their kids a chance to play with the big trucks and pretend they were Firefighters, we were there to prep our child for a possible future very scary day. We still get a bit choked up when we see an AMR ambulance with it's lights on, it still reminds us way to much of the long trip up from Yale.