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

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

Round I

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

Dam. And Damn.

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

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

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

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

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

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

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

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

Round II-

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

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

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

‘Abby! I need you’

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

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

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

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

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

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

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

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

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

Ah, DVD's.....

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

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

Double ‘Ah crap’.

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

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

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

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

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

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

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

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

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

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

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

Tonight is an early night for all of us…

Back where we started?

Ah, crap.

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

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

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

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

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

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

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

We do that no matter what.

Love

Happy Valentine's Day!

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

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

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

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

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

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

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

Clinic Update

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

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

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

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

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

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

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

A rock star.

15 Days...

Until pitchers and catchers report to spring training.


I don't think that they will be wearing their pink metallic boots or have their enteral tube wrapped around their arm. (but Manny will be Manny)

Multitasking with a $1400 piece of equipment

Our visit with Dr. Jennings was very good today. He is very pleased that Ellie is doing so well since it has only been Ten days since we left Children's and 18 since he cut her belly wide open. Having her giggle through the exam and treatment today was a good sign.

He shared our concern about the change in Ellie's ostomy/poop habits over the last week and believes that it is caused by her ostomy still being too loose to force food down her colon rather than the chimney being pinched off. This was great relief to us and even better was his description of the chimney connection as being 'wide open'. Wide open is good for now.

So we agreed that we need to make her ostomy opening even smaller and go back to plugging it with a g-tube. Conveniently we have a stockpile of old G-tubes that we got when Ellie's g-tube was bigger (16 French as they call it) that are no use to us. Call it karma but her current ostomy opening is exactly the size of her old g-tube. A perfect match.

So we will try plugging her for a while and see if we can convince the food to go down instead of out and hope for poop.

Let's hope the simple explanation is the best one.

Back so soon?

Yes, tomorrow afternoon we are heading back to Children's with dancing girl and her road show.

Like my dress? My Grampa picked it out.

Hopefully it will be a mercifully short visit with Dr. Jennings in his clinic hours but we have reached a point where we need his expertise/reassurance that things are okay after her last surgery. Ellie is doing well and singing, signing and dancing for us all day long but her pesky numbers don't match her mood or temperament.

In the last few days, even though we have kept her g-tube feeds relatively low (~15-17ml/hour) her ostomy output has jumped back to a level that is close to where it was before her most recent surgery (~800-1000 ml/day) and the number of poops has decreased to 1 a day at most. This is exactly what prompted that most recent surgery and after a couple days of watching the daily totals go up and up, we gave a call and got a slot to see Dr. Jennings tomorrow to discuss her recovery/progress.

There are a bunch of things that could be going on and we want to get his take on where we stand.

The easiest explanation is that her gut is still adapting to the new configuration and the tiny little fingers that line the inside of her gut are still growing back: These can take many weeks to grow back and if this is a normal thing than we will go home and wait and change lots of cotton balls.

Another explanation is that the plumbing has rearranged itself and re kinked. That would be a real bummer and we really hope that this isn't the case.

Then there is a the mystery solution like gut bugs or yeast but we don't see any real signs of this like gas or smelly balls. we know that something is up when Abby can say, with a perfectly straight face, 'Gib this room smells like balls!'

This may be all for naught but it will be good to have someone other than each other tell us that things are okay since her numbers show that something has changed since the first few days that we were home and having such good results.
If we just stopped weighing everything we'd never know anything was wrong.

Damned green book of numbers....

By the way wanna know the exact weight of any diaper in the last four months? Yeah, we've got it along with computer archives of every day's totals since December 2006. It keeps us from guessing and the daily total is often among the last things Abby and I say to each other each night.

We sleep better knowing the statistics of Ellie's gut. Odd but true.

Soft and Pink Round 2

Well the results are in and Ellie's biopsy supports all of the great news that we have gotten over the last 21 months about the effects of Omegaven to protect her liver from TPN damage.

The biopsy says, using very technical and scary words that Google says are really bad, that the damage to her liver is the same as her first biopsy that happened just after her liver function tests started to really improve in the summer of 2006. She still has some significant fibrosis in her liver which is a bad thing but it hasn't progressed toward the really bad things that we should have seen many months ago. This good news is further supported by the interpretation of Dr. Puder who noted that this biopsy was missing some of the damage that was seen in the earlier biopsy.

This is a big step for Ellie but also for all of he kids who use Omegaven since this is the first long-term follow up biopsy that they have done on an omegaven kid. Even though all of her liver function tests were good we didn't know for sure what was going on in her liver until now.

Who knows, she may just have her own medical journal article someday to go along with this blog that has chronicled all of her adventures so far.

We sleep a lot better knowing that the damage has been stopped and maybe even reversed a bit.

Ellie is oblivious to all of this and is most interested in her metallic pink cowboy boots that arrived today from her Aunt.

Christmas came almost a month late this year.

First few days home

Our first few days out of the hospital are behind us and we are starting to feel rested and a bit more normal. Ellie is doing great, has started eating some small amounts of solid food and is starting to gain back the kilo (2.2 pounds) that she lost during her stay at the Inn.

We are back to 12 hours of PN 5 days a week with the other 2 nights of 12 hours of D10(hydration fluid that is 10% dextrose). Ellie is only getting 15 mls of Elecare an hour, which works out to 12 ounces a day. Our plan is to get her back up to the 24 or more ounces a day, but we have to increase her slowly so we don't over whelm her intestines that are still waking up after surgery. It weird to see her not be that excited about food, but we are hoping this will change and we will have our big eater back soon.

The biggest difference in Ellie post surgery is poop. Right now it seems the surgery worked, her ostomy output is much less and she is pooping in her diaper much more than she used to. We just have to hope that this trend continues after all the inflammation is gone. Also her new G-tube site is beautiful.

We have had g-tube envy any time we saw parents with kids that had little to no dressing on their kid's G-tubes. Ellie's old site required 4 different layers of dressing and a lot of tape and then even then we had to change the dressing 2-4 times a day. Her new site is doing great and the old one has healed up very well.

All the dressing are now off of her incision line, and it is impressive. I guess it was hard for us to comprehend how big it really was until we could actually see it. It is very long. It starts just below her old scar (about 1.5 inches above her belly button) to just above her pelvic bone. It runs right down the center and even does a little half moon cutout around her belly button. I don't know why but I am having a harder time being O.K. with this scar, it just seems so big. It is a hard thing to see on such a small body. But then I look at her old scar, and it has almost completely disappeared, so I know this one will to. I hope.

We are looking forward now to days filled with nothing big to do but play and be normal. Ellie has clinic next week so, until then we just hang out and watch our girl grow.

HOME!!

We got the green light this morning and then the push for the door started. Ellie took a morning nap and then we headed out the door. She didn't moon walk this time, but she, and her mother were very happy to finally be outside again.
Gus and Karlene were waiting for us at home. Ellie got a nice bath and then has headed out on a walk with Gib. We are all glad to be home, and I think I will go take a nap. Thank you 10 East nurses and staff for another great stay.

Plans for Home

We are all set to be discharged tomorrow.

Ellie is doing well and has tolerated her elecare very well while getting better every day. We have transitioned quite rapidly from 24 hours of TPN to 12 which is her normal routine at home and we will give it a full 24 hours under the new regime and watch her very carefully to make sure that the limited TPN is okay with her.

If all goes well the gears are in motion today to get us out the door tomorrow and continue her recovery at home where she will sleep better, eat better and have more motivation to get up and move than she has in the scary hospital where she has recently developed a sizable fear of doctors.

We hope that we will be home by dinnertime tomorrow.

ahhhh.

one week. Just like we guessed.

I think I'll go for a walk...

Ellie continues to do very well in her recovery and was was sitting up in her bed this afternoon when I finally got into Children's after chasing a stubborn dog around the backyard.

She Sits! Since her surgery she hasn't wanted to sit or stand and preferred to lie on her back or on her side even to read books or play with toys. Our guess is that since the new suture line is vertical (from hr rib cage to her belly button it goes across the muscle that helps her sit up. With this healing sitting must be hard. Doing this without pain meds (not even Tylenol since she never shows signs of pain) makes it even harder. Today she was healed enough to sit up and was giggling as she read book when I walked in. A good sign.


She Walks! This afternoon she surprised us all by wanting to stand up and walk as we made our way around the hospital. At first she walked like a drunken sailor but after a little bit she got the ahng of it and walked a good 50 feet alone after shaking off my hand. Another good sign.

She Eats! But the best news of the day is that we finally got the go ahead to try out her newly plumbed gut. This morning they tried pedialyte and Ellie refused (saltwater after five days would suck for me, too). After that she was offered 20 calorie/ounce Elecare and she sipped it. With so much TPN going into her we weren't surprised that she wasn't hungry and we ended up giving it to her through her G-tube as a 'bolus' pumped in by gravity all at once. She has handled these feeds very well and will go on the pump tonight for continuous feeds at a slow rate.

She is on Reduced TPN- We finally got the go ahead to start reducing her TPN time today and this evening's infusion was 20 hours with a four-hour break in the afternoon. This will likely be pared down fairly rapidly as the days go on and we hope that we can get her back to just overnight TPN fairly soon. This will definitely help her build an appetite for Elecare and other foods.

We don't have any firm plans for discharge right now but as we walked this afternoon we met Ellie's surgeon and he asked us what we were still doing there? Even though it was half kidding it was a good sign that he is happy with her progress and we hope to be going home sometime later this week. Abby is at Children's tonight (Ellie wouldn't have it any other way) and will start the ball rolling toward discharge with the morning meeting with the rounding doctors. All of the infrastructure is in place at home so bringing her home shouldn't be nearly as hard as it has been in the past.

Home sucks without my girls. Wait. No, in the big scheme of things it doesn't quite suck but having them home is much better.

Poop, lots of it.

Last night as I lay next to her, Ellie put her newly adjusted bowels to work for us and laid down one very stinky poop. After I stopped congratulating her she rolled over and slept the night for me, a welcome break from the previous night that I was at Children's that I spent holding her hand as she dealt with hr pain meds and the falling feeling.

She has pooped another four times today and even though we are leery of too much of a good thing, it is good to see things move through to tell us that there is likely not an obstruction or other clog in her plumbing.

With shared that good news with Dr. Jennings and disconnected Ellie's g-tube from its gravity bottle today to let her handle her own fluids. If she can do this without trouble, we will progress to clear fluids tomorrow and then start ramping up her Elecare feeds after that. Everyone involved is very happy with her progress and she is perking up even compared to yesterday.

She is off of morphine already which is great and let's us roam the hospital with her. She loves to go for walks and see the sights which is good for all of us. For some reason going back to the hospital was much more annoying for Abby and I than we had expected. Taking Ellie to walk makes things much better.

Ellie all loaded up for a walk and showing us her Tiger impression.

We are still having trouble posting things to this blog from Children's so updates may befew and far between in the coming days but we will try and get good news up through a Starbuck's trip. Info to the world+ a double espresso is a good thing.

Steady as we go. We are still optimistic about coming home sometime this week.

Monday Update

Ellie is continuing to pare down her plumbing and over the course of the last 12 hours has lost her N-G tube, her epidural and the catheter in her diaper along with her heart monitor/oxygen sensors. That leaves her with just a central line and a fancy new G-tube, just like we came in on Friday.

With the loss of the epidural Ellie is now being hit with IV pain meds which might be a trick to get dialed in but overall her progress is good and her spirits are very high.

She is doing so well in fact that I am at home right now with Gus riding out a nor'easter that never happened (I swear the weather forecasters and the grocery stores are in cahoots) and will go in today around lunchtime to take over for Abby who spent the night last night.

She is still not eating or taking food through her g-tube which means a temporary round of 24-hour TPN but that is okay for now. Hopefully this round will let us move further away from TPN when we get home.

Judging by her progress so far, that is looking like it may happen sooner than we thought but I am keeping my finger crossed.

A Long Night but a good day

Saturday night was very long for Ellie, Abby and I. Ellie had some minor issues popped up that we chased for the evening which made it an all-night affair for Abby and I and we are bleary eyed right now but doing well.

N-G Tube To start off the evening fun and games a bit early, Ellie decided to roll over and start crawling in her crib yesterday afternoon. This usually wouldn’t be a big deal but right now Ellie has 8 tubes and/or wires hanging off of every corner of her body including an epidural line which has stayed amazingly well in her spine since Friday morning. Rolling over and crawling tangled them all up and gave us a bit of a scare. One minute she was asleep and still and the next she was up and moving. To make things more interesting, as Abby and our nurse worked on untangling her tubes and wires, Ellie decided to use the opportunity to give her N-G (Naso-Gastric) tube a good yank. This tube goes up her nose and down her throat into her stomach to drain the fluid that is accumulating there after her surgery and keep her new shiny G-tube. The nurse slid it back in but along the way caused some irritation which led to some scary red blood in her output last night and a call to the surgical resident who looked into the problem. Since then her fluids have gotten clearer and finally today things are mostly clear and we have taken off the suction from her N-G tube.

Fever- Then to make things even more interesting Ellie spiked a moderate fever last night. Not fun and a bit scary since infections are a real issue with surgery and central lines. Fortunately her fever hit a plateau at 38.4 degrees and never hit the 38.5 level where the doctors would take some action to bring it down. The surgical fellow that we have known since Ellie first got to Children’s (and coincidentally assisted in the operation to repair her prolapsed ostomy last winter) told us this morning that a low grade fever is normal for post-op days and not to worry. A hot Ellie will always make me worry.

Startle awake- to complete the trifecta Ellie’s epidural has made her have another round of startle waking where she will wake from a sound sleep as if she is falling which makes her scream as she wakes. To make matters worse she only lasted 20-30 minutes between waking throughout the night and through today as well. We have a very tired girl and tried giving her valium last night to take cares of the waking. It worked but not completely so we hope she sleeps more soundly tonight.

But on the upside......

Loss of the Peripheral IV- When Ellie came out of the OR she had an IV in the foot that was placed to help with surgery. We never used it after the OR so it was removed last night. A move in the right direction that brings us down to 8 tubes and wires. Hopefully it will be followed by paring down more tubes in the next day or so to get us back to our trusty two- a g-tube and a central line.

New Digs- We had a very Cheers-like experience this afternoon when our transfer to 10East went through and Ellie was wheeled across the 10th floor to the area staffed by our good friends that used to be on 8 West. We really felt like Norm walking into a packed bar on a Friday night and felt instantly relaxed after Jody spent some great time with Ellie and the two of us getting us settled.

As I told the nurse on 10 South: these nurses are great (especially Brian who was infinitely patient with us last night) but 10 East is on our Christmas card list!

It's good to be around family that knows our girl. I will go home tonight to take care of Gus and leave Abby and Ellie.

Who knows, Abby might actually go home one of these nights.

Surgical Update Part 2

I forgot to mention yesterday about what Dr. Jennings said about the status of Ellie's small bowel. He said it looked great! No dilation and it was all very pink with no strictures or adhesions. He said it looked a million times better than it looked last time he was in there. We did not have him measure her bowel, this would only have meant more time in the OR and more trauma for her. We know what we started with (around 30-40cm) and we know it is growing as she grows, now we just need to know what it can develop into.

Ellie also now has a new scar to add to the mix. Dr. Jennings didn't feel that he could reach all of her bowels using the old incision line, so he had to create a new opening. Gib and I were getting nervous about the ability of the old one to handle be opened one more time(it had already been opened 5 times), so we were happy to see the new suture line. The new one is just to the left of her belly button and it is vertical this time.

Ellie is doing very well. She looks much better this morning and is much more aware of her surroundings. The epidural is working beautifully and she is very comfortable. This is aided by the Benadryl that she is on, due to the itching caused by the narcotics in her epidural. With the Benadryl on board she is a very sleepy girl which is fine with us. If all you can do is lay in bed, you might as well be sleeping.

Both Ellie and her father are asleep right now which is good, we all need to catch up on some much needed sleep. Ellie slept for only short periods of time last night and Gib and I are having a hard time relaxing on this new floor. We are still on 10 South but hope to move to 10 East sometime this afternoon.

It is weird being here but not knowing any of the nurses, NPs or support staff. Even more frustrating is being here and having the staff not know us. We are getting some looks of skepticism when we ask questions and make requests. Many times we find that we are getting an answer but not the answer to the question we asked. I guess we also just miss our friends. Luckily we still have our great relationship with the surgical staff to help keep us sane.

We were in our room for about 10 minutes before Dr. Jennings came to check on our girl and then an hour later Dr Puder stopped by for a visit. This morning Dr. Gura stopped by and when rounds came through they were all familiar faces. The rounding surgical staff could not believe how big she was and they were all very happy with her recovery.

We will keep the epidural for the next few days and then see how she is doing. All in all Ellie is doing great and we are happy. Ellie has been asking for “Ga-Ga” (Karlene) and for “Good Dog Gus”. Hopefully she will see them both soon.

Soft and pink

Those are the words that Dr. Jennings used to describe Ellie’s liver. Take a minute to think about that, 20 months on TPN and her liver is “Soft and Pink”. He took a biopsy of both lobes, but said from what he could see and feel, it is in great shape. THANK YOU OMEGAVEN, THANK YOU DRS PUDER&GURA!!!!!

Obviously she is done. We got a call around 1:30 from Dr. Jennings and met him at Au Bon Pain while he got his lunch. He said that the intestines looked great, very little adhesions and that the connection between small and large bowel looked great. The reason food wasn’t going down the colon was that the connection had folded over on it’s self. He straightened everything out and said that is all that was needed.

He did make the ostomy smaller, but only under the skin, so what we see from the surface will look the same. He was going to make the skin opening smaller but said that would have caused a wrinkle in the skin, he was concerned that this would make it hard to keep ostomy bags on. We really appreciate the fore thought, we don’t need any more ostomy bag challenges.

G-tube. He looked at the old track and decided that here was not much he could do. So he installed a new hole. He cut a new hole in the skin but used the same hole in her stomach. It looks great and we are going to try everything we can to keep this one looking good.

Ellie moved to recovery in the PACU at 3:30 and we got to the floor around 5pm. But, we are not on 10 East (8west) there were no beds available. We begged and pleaded but they weren’t willing to kick some one out for us. Shame. So, now we are on 10 South. Same church different pew.

Ellie looks great. She had a very easy recovery with very little pain. She still has the epidural and it seems to be working great. Knock on wood, this is the best recovery she has had so far. It isn’t fun to see so many wires and tubes coming out of her, but they are all helping her feel better. The first time she woke up she looked at me said, “Ma, Ma” and then gave me the sign for the Wiggles. So we pulled out the DVD and we have a very happy girl.

We now can not post on our blog using the hospital’s WIFI, we have to wander with a laptop and find a free signal. We will post more when we can.

12:30 Update

All is well from the OR. At 9 she went under and was ready for the surgeon. By 12:30 they were still opening things up and working through her adhesions, strands of scar tissue which formed after earlier surgeries. Once these are open and out of the way they can get on with the real work of revising her plumbing..

We are thinking that around 3 PM (9AM plus 6 hours) she should be done with the OR and then it is usually an hour or two before she is cleaned up and ready to see us in the Post Anesthesia Care Unit (PACU). We are not on the list for a stay in the NICU so we hope to be up to our friends on 10 East a little after dinner time.

Abby is asleep on the couch in a quiet corner of the waiting room hopefully dreaming of yesterday's Ellie dress-up session:

With a smile and a giggle she is in

ellie went in for surgery a few minutes after 8 this morning.

we met with Dr. Jennings for a while before hand to go over the detials of what he is going to do and we are still looking at a 'revision' of her plumbing and some work on her g-tube to make it less leaky since, as he told us, we are in for the long haul with it.

He planned for 4-6 hours of surgery but told us that it could be a longer time in there depending on what he finds and whether it looks like it doesn on the x-rays.

She was offered pre-op sedation while we waited but giggled as the Dr. offered it so we passed and she danced her way into the OR with her mom.

We are at starbucks across the street having $4 lattes and will check in from time to time. The waiting room is a tough place to wait.

and we haven't even gotten to the hospital yet....

For some reason this time around we decided to say what the hell and not rest up before Ellie's surgery tomorrow. In fact, until today we pretty much ignored that it was coming (other than using her impending stay at the Longwood Bar and Grill as an excuse to delay our new Year's diets).

I may have taken that approach a little bit too far when I agreed to make a two day work trip to Washington Wednesday and Thursday before Ellie's Friday AM surgery. I hope it doesn't come back to haunt me.

My miracle of modern transportation went something like this:

4 AM Wednesday- I wake up change Ellie's various middle of the night things, feed the dog and leave for the airport at 4:45 AM

6:30 AM I fly to Washington and arrive at the headquarters of my job

11 PM I finish a full day and evening of work.

9 AM today I start meetings.

5 PM I start my trip home.

10:42 PM I am in our driveway staring down another 4:30 wakeup call tomorrow to head to Children's for Ellie's surgery.

We need to be there by 6 for pre-op. I am glad that there are many Dunkin Donuts along the way for coffee and fully rationalized 'necessary' donuts....

But I shouldn't complain since it was Abby and Karlene who were here all day today doing pre-op 'bowel prep' with Gut Girl. I won't go into details but it involved huge volumes of laxative solution and numerous rounds of, shall we say, bottom-up cleansing? Ellie was good sport apparently which is amazing to me and we are all very glad that they could do the prep at home instead of checking in a night early.

Relative to that, though, a 42 hour round trip to Washington sounds easy to me.

We will try to post updates as the morning goes on but, knock on wood, everything should be pretty smooth.

I'm a big girl-3T thank you very much!

Ellie continues to be very long and thin. This makes her doctors (and her father) very happy to see her genes doing their thing.

This length hasn't been a problem for us until recently when her lanky legs turned most of her pants into 'high waters' or winter capri pants. Bare leg above her shoes and below the suff of her pants is a cold situation.

Today we opened up the box of 3T clothes to see if they fit and would keep her ankles warm. Ellie got one look at these overalls that her aunt Beth made for Ellie cousin a few years ago and refused to move until she tried them on:

Abby is sad because she is a little girl and not a baby any more with these pants on. My mom is concerned that she needs a bow to make them more girly. I'm happy to see them on and even happier for the room around her middle to fit the ostomy bag.

Now if they would just make 3T overalls with snaps on the inseam but I think that the skills are on hand to fix this.

We have a date!

We have a date! Next Friday January 11^{th at 7:30am} Ellie is going in for surgery. We went in to meet with Dr. Jennings today to talk about what our next step is in Ellie’s treatment.

(Okay, so I got a bit creative and did some drawings to help me explain Ellie's bowel layout. I never claimed to be an artist, I just knew that I wouldn't be able to describe it well enough.)

Before Ellie’s surgery in November of 2006 she had a small bowel that was grossly dilated at 4cm wide and a colon that was rarely used and much smaller than her small bowel. Her small bowel had no motility and very bad bacterial overgrowth. See picture below:

Dr. Jennings intalled a large ostomy at the end of her small bowel to relieve the back pressure that was causing the dilation. He also straightened out the bowels, fixed some adhesions and then right before the small bowel ostomy left her body he reattached her colon. This means that even though she has an ostomy she is still able to use her colon. This is huge because this is how the human body absorbs water. See picture below:

Our goals were to relieve the back pressure on the small bowel, which would allow it to un-dilate and return to a normal size, and increase the usage of the large bowel. It worked.

She did great. She is still in the 75% for weight and height and has gained 10 pounds in the past year and is eating up a storm. We have found that she loves chicken, eggs, and believe it or not beef stew.

But.. you can't expect that when you create something and then shrink it that it will look or function the same. Anyone who has accidentally put a favorite sweater in the dryer will understand. When Ellie's small bowel went from grossly dilated to normal, the connections shrunk also. The end result is what we are dealing with now, and that is that the connection between the small and large bowel is too small causing all most, if not all, food and fluid to go out the ostomy and none down the colon. This created some serious dehydration issues.

So, now we look at what is next. And that is surgery with Dr. Jennings next Friday. The plan for the surgery is...

1. Enlarge the connection between the small and large bowel.
2. Make the opening of her ostomy smaller to force more food down her colon.
3. Clean up the track that Ellie’s G-tube goes through. She has a considerable amount of gastric mucosa (lining of her stomach) rolling out of the opening. This makes it so fluid will always leak around the tube causing skin break down. Ellie will have her g-tube for a very long time so need to make sure it is going to work as well as it can.

This is what we are hoping for at the end of Friday:

Our goals for this surgery are:

1. A colon that gets to see more food/liquid. This will enable her body will be to retrieve more of it's own water and so the amount of IV fluids she gets every night will decrease.
   
2. Less output out of her ostomy.
3. A stronger small bowel that can handle being completely reconnected to her colon with no ostomy down the road.
   

We had been talking with Dr. Jennings about making her ostomy smaller this spring, so we are just doing it a bit early with some extra stuff thrown in. We are not getting rid of the ostomy by reconnecting her small and large bowel completely, because there is too high if a chance that she will re-dilate back to where we were a year ago.

We are excited about this surgery and are ready for more poopy diapers and a smaller ostomy. We are not looking forward to the week or so she will be in the big house after the surgery, but we will manage. We have never been inpatients on 10East, it will be nice to see how it stands up to good old 8West.

The good news is that we are going to be able to do the bowel prep at home the week before the surgery. Much nicer than spending the night before the surgery doing it at the hospital. We are hoping this leaves us with a happier more rested baby, and parents, for the big day.

After all that, here are some fun pictures of Ellie from our great weekend in Vermont with the Leichter family.

Also we got all the results back from the cultures and biopsies from Ellie's day in the hospital for day surgery and all the results were normal. No overgrowth, and no allergies. Very good news.

Sledding!!!

Here is a montage of Ellie's first sledding adventure.

Details to follow.



Wheeeeee!!!!!!

Ellie went to bed tonight asking for more sledding (with her favorite signs-'More' and 'Please').

A Christmas U-Turn

I like these trees, and the songs but I'm not really sure what they are all about....

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:

And my bowel is this big......

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....

Christian's Re-birthday

1 year and 2 days ago a little boy we met at Children's hospital got a liver, small bowel and partial pancreas transplant.

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.
video.google.com/videoplay?docid=-2702633552182627672&pr=goog-sl

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.

a view inside

Ellie had her endoscopy study done this afternoon and it went off without any significant difficulties.

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..

No answers, yet.

Ellie's stomagram was uneventful today. She handled the procedure much better than others and we even had her laughing at one point while on the table. We thought it was great, I'm not sure the radiologist agreed. But the end result was that it was next to impossible to see if the contrast went up or down. So, no answer.


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.

Studies

We had a bit of snow up here.....then rain, then ice and then a bit more snow. You've just got to love this New England weather. Good thing Ellie loves the snow.

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.

A year on our own turf

Today marks one year since we moon walked out of children's with Ellie for the first time. Yes we were back for two short stays since but as far as long visits go, we packed up our show a year ago today.

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.

Clinic

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.

If all else fails and we can’t find a reason for the trouble there is always the possibility of simply reconnecting her to let all of that liquid go into her colon to be reabsorbed- the way her body is supposed to work. The doctors would prefer to resolve the output issue before reconnecting her, though, just in case there is another problem in the works.

We all agreed that we would be much more worried about her huge outputs if she weren’t so happy all of the time or acted even a little bit sick: But so far she is in great shape and it is more of a nuisance than anything right now. Ellie was in great spirits for the entire clinic including an ostomy bag change which gave the surgeons an opportunity to jam their fingers into her ostomy. Yeah really jammed it right in there and felt around. I guess if you are the one to make the ostomy, you can do whatever you want…..

During most clinic visits our appointments take up the whole afternoon. Today we needed to get blood drawn so we got there early and had an our free before our appointment so we took Ellie up to the inpatient floor to see another family with short bowel that is in Boston and just had surgery. While we were there we saw a lot of nurses that we had known while we were in the hospital and showed Ellie off to all of them who knew her when she was small and bald:

Seeing her curly haired and running a year later was good fun for them, I think.

Apparently the short bowel clinic is very busy these days and one of the great nurses told us that they call the floor Short Gut Alley since it is full of kids with short bowel. Knowing that all of those kids are likely on Omegaven is really encouraging.

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.

Christmas Season Begins Early

We have had an very active few weeks chasing both Ellie's gut and Ellie herself.

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: