She's UP!!

She is up and moving! We had to remove the epidural this morning because it was leaking so much. Your spine can only take so much liquid and Ellie's was full. When the epidural went so did the Foley catheter. That made for a much happier Ellie. This also meant that it was time to bring on the IV Diloted. Luckily she doesn't seem to get itchy from this pain killer, so it may be our drug of choice from now on.

This was Ellie for the past two days

This is Ellie today!

So we got up and out of this room!!!

While on the tour of the floor Ellie had the camera. So the following is Children's hospital from her point of view including a few self portraits. Enjoy.

We ended our tour at the playroom where Ellie got up and walked to her favorite toy. Walking is a big step, and now all we need is poop.

Let the poop watch begin!!

Precautionary Management

After a moderately eventful night things are moving along nicely for our girl.

The name of the game in the first few days after surgery is always dealing with Ellie's pain. At various times in the first few days we deal with pain from: her surgical incision, pain from her bowel as it wakes up, bladder pain as it deals with the Foley catheter which can cause bladder spasms and other non-descript pains that come and go.

To manage these various forms of pain, Children's has a Pain Management Team which visits a few times a day and checks in. Although Pain Managers sound like they may be a bunch of sadists along the lines of this six-fingered man in the Princess Bride, they are a group of doctors whose job it is to make sure that she is comfortable-a noble job with no evil.

The heart of her pain management is an epidural in her spine that numbs most of her lower torso and treats almost every kind of pain (other than the damned bladder spasms). A thin wire tube runs from a special IV pump into her spine and like magic she is comfortable. If things are perfect, it looks like a piece of saran wrap on her skin with a tiny black wire that disappears into her back.

Epidurals are quite fragile, however, and in the past we have only been able to keep one in her for one to three days at most before it falls out.

Losing the epidural isn’t a question of if; it is a question of when.

Late yesterday afternoon after Abby had gone home for an evening with my dad (a recipe for fun if ever there is one), the nurses started to have some concerns about her epidural site. Over the course of the day yesterday, fluid started to leak from the epidural wire and collect under the clear dressing. The fluid that should be going into her spine wasn’t all getting there and the wire might be sliding out.

We were likely going to lose her epidural during the night- something that always seems to happen at 3AM when the on-call person is busy with another kids, the equipment is slow to arrive, the meds are slow to appear on the floor.

It leaves Ellie grumpy and in pain. Usually at 3AM.

It also seemed like an avoidable combination of factors. So I borrowed a concept from my day job and asked about it with one of Ellie’s best nurses- Precautionary Management. Let’s anticipate what might happen when her epidural fails, take some steps ahead of time to prevent or minimize the adverse effects of her epidural failing and maybe avoid the gap in pain management that comes between the epidural and the next tool in the pain management toolbox. She agreed with this idea, told me where the snags in the process were and we made a plan.

At 7PM with an epidural that was still moderately effective, we started to get things in line for what’s next. A special pump was ordered, IV lines were strung and meds delivered.

Just in case.

A far better option for Ellie than the middle of the night scream and scramble.

And, it was all for naught.

The leaky epidural keeps doing its thing and Ellie is still comfortable.

But the overnight was a lot easier knowing that the morphine is in the room, ready to take care of business.

Which leaves us in a similar situationas 24 hours ago. Ellie is confortable, sleeping a lot and watching Cinderella and Sleeping Beauty a lot. But we are noticing that she is far more lucid when she is awake which is a definite step in the right direction. It is nice to hear her voice again and hear her ask questions that are very Ellie:

"Daddy, why is there a tube in my noonie?"

"Daddy, when can we take tube out of my nose?"

"Daddy is the suppository like the good ones or the big one?"

Just your average conversations with a three year old, right?

Good Night

Ellie is half awake and half asleep right now watching Sleeping Beauty. She had a good night with only a few awake periods. We did have to increase the pain meds in her epidural this morning. Since the increase she is doing better and seems comfortable.

It is weird for Gib and I, her reconnection surgery was 3 months ago, so this all seems way too familiar. For past surgeries we have requested to do bowel prep at home. But this time we decided to come in. It was a great idea.

We were able to get a room on our floor, request the meds and orders that we wanted post-op to make Ellie more comfortable, use Ellie's room as home base during the procedure and have a much more smooth transition back to the floor after the PACU.

The best move we getting the orders written for anti-itch drip before the surgery. In the past she has been incredibly itchy from the pain meds, even going so far as to rub raw spots on her face. We have discovered the Benadryl does nothing for her and a constant infusion of Nubain is the only thing that gives her relief. This time we started the infusion before she started to itch and it worked wonderfully. She has had next to no itching.

As for bowel prep, it did help that she had been either NPO or on only clears for the past 2 weeks, so bowel prep was a breeze.

Wait.. a breeze for us, Ellie still did not like it. No surprise there. We have started the practice of shopping before we go inpatient and making sure she gets a present after any especially unpleasant procedures. This has helped a ton. As soon as we are done with a procedure she will stop crying and ask what her surprise is. Distraction is a great thing.

Both Gib and I stayed here last night, taking shifts sleeping in the playroom. Amazingly we both feel pretty well rested.

Now we all are in for a day of rest, recovery and lots and lots of princess movies. Once again sorry for the lack of pictures. We are working on that.

Back to the floor

We are back upstairs, fully wired for post-op recovery.

Right now she is sleeping comfortably with:

• Two new IVs in her arms,
• three wires for a heart/breathing monitor,
• a dreaded N-G tube for her stomach,
• her g-tube draining to a bag,
• a foley catheter for urine,
• an epidural in her back
• and her good old central line

Fully wired, but very comfortable.

Interesting factoid of the day: the recovery nurse needed to double check with us about her CVL, (central IV line). Apparently it has been in for 1,116 days.

Yup, that's right more than three years with this line.

Please knock on wood for us right now.

All Done

We just finished talking with Dr. Jennings.

All went very well, the stricture was clearly causing issues. He removed the stricture without losing any intestinal mucosa (the part hat absorbs nutrients), did the fancy cut and resew from the diagram and closed her up.

He saw some significant scar tissue in her belly but tried to avoid disturbing that which would complicate her recovery.

The best news is that after he repaired the narrowing, he could see fluids flowing through the affected section into her colon.

Nice.

She is heading to the PACU right now and we should be called in soon to sit while she wakes up.

4:45 Update

No news from the OR. The nurse liaison called a little while ago and told us that they finished prep and began the surgery at 3:30.

We will get another update around 5:30.

That puts on schedule for a very late return to the inpatient floor after a stay in the PACU (Post Anesthesia Care Unit).

The recipe for a long night.

A Versed Cocktail

She's in. A double shot of Ativan and Versed and she was feeling fantastic as Abby dropped her off in the OR.

It should take 3-4 hours depending on what their explorations find in her belly.

More when we know it.

Surgery Friday

Dr. Jennings was back in the office today and after looking at her UGI and manipulating his busy schedule has booked Ellie for surgery, most likely some version of what is called astricturoplasty to relieve the narrowing in her bowel that is causing things to dam:

Friday at 1:30.

We check in Thursday around lunch for a night of prep to get all of that nasty barium chalk out of her poor bowel and then away we go.

Where You Know the Radiology Tech by Name

Monday morning Ellie had another round of residual fluid in her stomach. About 4 hours worth of Pedialyte was still there when she woke up which told us that, although she had some success with her feeding experiment on Saturday night and Sunday, things are definitely not better. The problem was not solved by bowel rest nor was it a case of her bowel being slow to ‘wake up’ after her endoscopy.

Something is still causing trouble.

We stopped the pump and made her NPO again while we waited, worried, imagined what it could be. Allergies? Irritation? Inflammation? Dead bowel? Some mystery ailment?

We also got in touch with Dr. Jennings. His advice was to wait until the Upper GI (UGI) study that was scheduled for Tuesday afternoon and see what it shows us.

Today we took Ellie in for her UGI to see her favorite radiology tech named Jackie who is just wonderful with Ellie. As always, it was freezing and we forgot out sweatshirts. Again.

That makes three UGIs this summer and four contrast studies since June. Yes, her Geiger counter is probably humming these days. But what is the option?

We were advised to bite the bullet and use the chalky barium since it provides a better view of her bowel despite its horrible after effects that virtually clog her plumbing until it passes. The images were remarkably more clear than the UGI from a week and half ago.

The images showed us bowels in significantly worse shape than what we saw last week.

The first thing we saw is that her small bowel is quite dilated. Again.

With a load of barium passing through, it looked alarmingly similar to her bowel pre-ostomy (November, 2006!). When the bowel was fully loaded with contrast it looked like we were looking at two stomachs.

Oh shit. Not again.

F#%^! F#%^! Double F$%#! What word can I say that is worse than F#%^?

As you might expect, this caused some serious Oh Shit! looks between Abby and I in the radiology suite.

Once we convinced the radiologists that dilated bowel was not "normal" for this short gut kid, the radiologists did their thing, manipulated her belly and saw something peculiar. A possible cause of the dilation is a distinct narrowing in her bowel that is slowing things down as the barium worked its way through. They just followed the dilated bowel down until they found normal bowel and then investigated more.

Dam. Literally.

This, believe it or not, even though it will likely lead to another surgery.... Was welcome news for us. Fixing a medical problem like an allergy or nerve problem can be very difficult to treat if treatment is available at all.

An anatomical problem can be fixed. We hope.

Dr. Jennings is back tomorrow and we hope to get in touch with him and pencil in the next chapter as soon as possible to, as the ad says, Get in. Get out. Get on with things.

Pre-school starts September 8 and Ellie is raring to go and play princesses with he other kids.

Oh yeah. We lost our digital camera during our stay at Children's last week. Sorry for the lack of pics. We promise she is still just a cute and happy as before.

Home Rehab

Friday we tried Ellie on clear fluids (pedialyte) at a very slow rate of (20 ml and hour) to see how her system would react to something going down for the first time in more than a week.

After an overnight at this rate Abby checked her stomach contents and found that she still had 170 ml in her stomach, a sign that things weren't working and a bit of depressing news to us.

Checking stomach contents is quite simple with Ellie's g-tube. Simply attach the extension to her g-tube to an empty 60ml syringe, attach the extension to her g-tube and see what comes out. Voila! We can see what has passed, what is still there and what may have sloshed up from below. We can also make the choice to return the contents to her stomach by letting gravity pull the fluids back into her stomach or discarding the fluids (and effectively vomiting for her).

They joys of access. Without this handy tool we would be in amuch worse situation and looking at the dreaded N-G (naso-gastric) tube for her stomach access. We love her button.

Yesterday morning we stopped her fluids and spent most of the day thinking and worrying and speaking with her doctors about what would be causing this. After an in-person talk with Dr. Jennings (on a Saturday!) we agreed to try again and see if things had woken up with the understanding that if things weren't working that we would get an upper GI contrast study done sooner than Tuesday to investigate the cause.

At 1 o'clock yesterday afternoon Ellie went back on pedialyte at 10 ml-1/3 of an ounce-per hour. At 5 PM there was nothing in her belly and we ramped up to 20 ml an hour for the overnight. At 9 and 11 PM, and 1, 3, and 6 AM today we checked her stomach and her belly was clear!

When rounds came though this AM they were very happy with this news as a sign that things had jump started so we bumped up to 30 ml/hour. We also started things in motion toward discharge and at 10:30 this morning, ahead of the mythical 11 AM discharge time that nobody ever seems to meet.

So we are out the door and home with the understanding that things are going well but they want to see her if she shows any signs of her bowel slowing or misbehaving with increased stomach contents, belly distention, pain, etc.

The 21 miles from here to Children's is close enough to be here but not so far that we can't be there ASAP if needed.

This afternoon she went up to 40 ml/hour of pedialyte (her full rate) and we will see how it goes before bed.

If things are still working, we may try some dilute Elecare tomorrow.

Not Tolerating

We started Ellie's on pedialyte yesterday via pump through the G-tube. The pump ran all night and this morning she woke up with a very distended belly and when I went to vent her I got almost all of what we gave her pushed back at me. So she did not tolerate the feeds.

We emailed Dr. Jennings this morning and then he came by for visit. We gave her a bit of a rest and then re-started feeds at a lower rate. After about 5 hours we increased again to where we were last night. she is napping right now, we will vent her when she wakes up and see how she did.

We were given the option of getting discharged last night, but decided to stay for the night and now we are glad we did. Bloated belly and not tolerating food is what got us here over a week ago. And now we are back to the same problem.

We still think that the problem is the small bowel. Since we got admitted we have done a lower GI, to look at the colon and it looked good. Then an endoscope yesterday to look at the throat, belly, the very beginning of the small bowel, anastomosis, and colon. Everything looked good. So the last time we looked at the small bowel was over a week ago, with the upper GI last week that did not look good.

We are hoping that she tolerates the pedialyte today but if not, we will take another look at her small bowel with another upper GI. I honestly don't know what to wish for... for her to tolerate her feeds and we go home with no real answer? or for her to not tolerate and we get an answer, and an idea of what to do next? I'm starting to feel like I might be going a little crazy, but only just a little.

Answers but no solution

After a long wait, Ellie's endoscopy went off early this morning. She went under around 11 and was back out around 12:30. She came out of anesthesia just fine and is back in her very fancy room groggy but doing well.

The endoscopy told us a few things. First, from below her colon looked good and the insides of the anatomosis looked good with no apparent narrowing or kinks that would be causing food to slow down. Equally good news is that the tissue around the reconnection looked pink and healthy.

From above the inital portion of her small bowel lookes good as well. One problem with the upper endoscopy is that is can't reach all the way to the end of the small bowel but what the doctor saw looked nice and happy. They took samples for bacterial cultures and biopsies to tell us more in the next few days.

So what they saw today all looked good. Which is good but doesn't give us any answers on why things aren't working. Which leaves us with the same puzzle with a few more pieces filled in.

Abby and I have each come up with some amateur theories on why this is happening and we will hopefully get a chance to discuss these with Dr. Jennings sometime soon. He was in the OR today and saw the scoping and likely has much more informed ideas as well.

Ellie is happy and watching Cinderella for the afternoon.From there we will come up with the next steps in the plan and see where we go from here. It will likely inckude slow feeds by pump tonight, going home tomorrow tomorrow and the a follow up Upper GI study next week to check on the status of her bowel.

"I'm sorry, Daddy"

That is what Ellie had to tell me tonight at 10:15 after I had woken her from a sound sleep (no nap today) in her warm bed, carried her into another room and held her down while a nurse gave her her third enema since 4 PM. Bowel Prep for today's endoscopy.

"I'm sorry, Daddy."

I don't get choked up very much about these things but that about did me in.

No. Kiddo. I'm sorry.

She was asleep again by 10:20, sweaty and redfaced.

It took a lot longer for me to go back to sleep.

Change of date.

Our date for the scope got pushed back from tomorrow to Friday. So we are in for more of the same. We will do a very small amount of bowel prep since she has not eaten in a week. So we are in for more of this..

Playing on the playground

Flight for life helicopter flying over the play ground

All the GI docs that can do the balloon procedure are either on vacation or out of town. So wait we must. We are having fun and Ellie is happy. But we a getting a bit sick of waiting.

More waiting.

We had a very mellow day yesterday, starting before the sun came up. Ellie and had a good time watching the sunrise

and doing some arts and crafts.

We now have a very "Fancy" room thanks to Ellie's new art and her gramma's special presents.

This is Ellie's favorite way to watch TV.

Her grandpa and gramma came for a visit and a tea party. It was a very uneventful day. We had a few run ins with cocky residents but then we talked to Dr. Jennings and made a plan. We have a scoping appointment tomorrow at 11am. They will take a look and see what they can see, test for bacterial overgrowth, and if possible use the balloon to widen any narrow spots. Even though the enema showed us nothing we all still believe that there is something wrong.

So today we just do some more waiting. A few more laps of our floor, the 2nd, 1st and basement floors, and trips to the garden all Ellie's big wheel. She is happy and doing well.

3rd time is the charm

Ellie finally did some good pooping this weekend and cleared out all the contrast from Wednesday. So we were able to do the study of her large bowel today. Usually this is not a nice experience for Ellie or for us. Contrast enemas are fun for no one, but especially not for anyone that is missing their ICV (Ileocecal valve). But we had a long talk with the radiologist and the tech and also got Ellie some Lorazepam to help with pain and anxiety. And the test went very well.

But bad news is that they did not see a blockage, narrowing, or signs of adhesion. So we still don't know anymore than we did last week. We are waiting to hear back from Dr. Jennings about what the plan is from here. Gib and I would like to scope her because we know that something is wrong but now what.

Ellie is doing great. No shiner from her fall yesterday. Currently she is asleep and doing very well.

We will post more tomorrow when we hopefully will know more.

Good Day

Ellie is doing great. We did discover the cause of her conk out yesterday morning. Blood sugar. We didn't think that it could be the cause since she was on D18 in her TPN and to have low blood sugar 15 min after ending the infusion having cycled down.

But she did it again this morning and we tested her blood sugar. It was 54. Normal is around 100. So she was very low. Our theory is that when she is eating she can handle the cycle down with no problem, but when she isn't eating, like now, we need to cycle down over more than an hour. We will try that tomorrow and see what happens. Her sugars did come back up after about and hour.

We had a good day. Ellie looks way too good to be in the hospital. We had a great time playing in the garden and goofing around.

This is how Ellie was the entire time we were exploring the hospital today, running ahead and leaving us in the dust. The only bad part was about 5 seconds after I took this picture she fell and hit her nose on a stone step. She just might have a nice shiner tomorrow.

Gramma and Grandpa came for a visit as well.

Change of plans...Again.

Right now I am watching Ellie dance around our new room on 10 east at Children's Hospital.

This morning she woke up at 6am (like she usually does), we unhooked her from TPN and then about 15 min later she said she was really tired and wanted to go to bed. I took her upstairs and she was asleep before her head hit the pillow at 7:15am. This was not normal. We called Dr Jennings, woke him up (sorry!) and he told said it sounds like it is time to head in.

So, we spent 6 hours in the ER and are now hanging out in a shared room on the floor with all our favorite nurses. Ellie's white cell count and CRP are normal so it looks like we are just looking at the GI issues. We did get another x-ray of her belly and it still has contrast on it. Ugh.

Ellie is doing great now, she is very excited to be "in the big soft bed with the table that goes across." We have been down to the garden, picked a great Cinderella carriage balloon and we are now watching Cinderella. This will be the norm until Monday afternoon we we try the enema again.

Gib's folks have come down and are staying at our house for support for Gib and I and to help take care of our boys( Gus the wonder dog and my sisters dog Nicky).

Home for the Weekend

We are back home. YAHOO!!! Sadly it was because there was still contrast in her colon from 2 days ago. But Dr. Jennings was happy with how well Ellie was doing considering she is not eating and said we could manage her at home.

So here we are, at home and loving it. Ellie is doing really well today after a very large TPN bag last night. She has so much energy and is just as happy as we are to be home.

We do have an appointment on Monday to try to do the contrast study again. They told us to come ready to be admitted again. So now we have all weekend to relax, and do as much fun stuff as we can.

lets try this again

So, now the plan is to try for the lower GI study again today. The hope is that she will have absorbed all of the old contrast and we will be able to see what is really going on. We are also going to be admitted after the study. We can manage her at home but with the weekend coming and the fact that it is easier to get a scoping/surgical slot booked when inpatient, we decided it was a good idea.

Ellie is still in good spirits, it is hard to remember when looking at her that something is wrong. She is paying with play dough right now and has been up and singing since 6am.

The only reminder is that occasionally she needs to be vented and what comes out is dark green. This is the color that makes all parents of kids with GI issues cringe. Dark green = things are not good. That is the color of what comes out of her bile duct. It should mix with food and then change color. This all happens in the first part of the intestines, you should never see dark green in the stomach,.... unless something is not right.

We leave for the hospital at noon and we will post again as soon as we know more.

Bad and Good

Bad: We arrived all ready to do the lower GI study today but, the contrast from yesterday's study was still in her and hadn't really moved anywhere. Even though we used the special water soluble contrast, it is still in there. This means that she is almost 100% blocked. Dr. Jennings came down and we talked about our options.

1. Endoscope from below to check out what is going on at the anastomosis, then use a balloon to dilate the connection if possible.
2. Surgically fix the problem

We choose option number 1. For now. If we can fix this without surgery that would be great. But we will be ready for option number 2.

So for now she is basically NPO (nothing by mouth) and on 100% TPN until we have an appointment for the endoscope.

Good: WE ARE HOME. We get to do all this waiting at home! Ellie gets to hang out in her new bedroom and play in her own playroom. And Gib and I get to sleep in our own beds and have home court advantage when caring for Ellie during this time. Home, when you are home it is a great word, when you are inpatient it is a word we try not to talk about.

I have to go snuggle on the couch and watch Cinderella with my Cinderella.

No news..Is not always good news.

Again, we have to apologize for not posting earlier.

We used to say that when it came to us, no news means good news. However, in the age of reconnected Ellie, this just doesn't seem to be the case. The reason we haven't posted is because we haven't had a clue what was going on and with everything in such relative chaos, we didn't have any clear ideas to report or the energy to report them.

We have known that after Ellie's reconnection surgery in May we would be looking at a completely different girl and everything we knew about her bowels would go out the window.

Oh, how right we were.

We had weeks of Ellie eating anything and everything we put in front of her, with great poops and weight gain. Then, all the sudden, we would get vomiting, and intolerance of all foods. This continued all summer; 1 week bad, 1 week good, 1 week only okay. We also recently started to see a new bloated and distended belly-she started looking and feeling like she swallowed half of a small watermelon.

Following what we know about short gut and given the time that had elapsed since her surgery we started thinking Short Bowel Bacterial Overgrowth (very common in short gut kids), stomach bugs, C-Diff, and allergies. So we tried everything. Cycling antibiotics for overgrowth. Removing all solids, then reintroducing them very slowly. Limiting her diet, pushing her to eat and poop a bunch. We saw some signs of success and would join the Cipro fan club only to have her slide backwards.

Finally after a few recent rounds of barf-o-rama, we started thinking that something might be wrong with her plumbing- a bowel obstruction. Today we went in for her second Upper GI contrast study of the summer. We almost didn't do it since we ended up in the ER two days after the last one. They are very hard on her gut. But we are very glad we did.

3 Hours after the contrast was added to Ellie's belly through her G-tube, the contrast still had not moved from her small bowel to the colon. In the past we have seen this time be as short as 30 minutes.

Enter super Mom with Dr. Jennings on speed dial.

10 minutes later he was in the waiting room with us and explaining what he saw: obstruction or narrowing of the anastomosis(surgically created connection between small and large bowel).

This means that the food and fluids that have not been able to go down have been backing up in her small bowel, and wait for it..... dilating her small bowel.

%$#@&*^! ANASTOMOSIS!!!!!!!!

(This statement really best yelled and while shaking your fist in the air.)

Yes, this is the problem we have had for... um,..for.ever?

First when she was inpatient before the ostomy and then after when she had the ostomy and we were trying to get more stool to go down her colon.

So here we are again. Hopefully not back at the beginning but the view is eerily similar.

We head in tomorrow for a lower GI contrast study through a contrast enema (oooh!). If we still see this problem then we will probably be admitted to wait for a surgical spot to fix the narrowing. As we finished talking this afternoon Dr. Jennings was toying with idea of setting us up with enough IV hydration fluids to compensate for the lack of any food or liquid going through her gut and letting us go home for the weekend and then come back on Monday for admission and sugery. We can hydrate her here as well as in the hospital so if a surgical apot isn't open until Monday that sounds like a great option. Ellie does best at home and biding our time in the hospital with a happy girl is tough duty.

All this does mean that Ellie is off of all solid foods. She can have small amounts of clears but not much as most everything is backing up. Not really that easy but I think she has been feeling pretty yucky over the past few days and this will make her feel better. Looking back at the summer, this would explain almost all the problems we have so far.

After Dr. Jennings left Gib and I were pretty sad. The idea of another surgery, and hospital stay is not something we look forward to. But on the flip side, it is an answer to a question that has been beating us up all summer. Now we know what was happening and hopefully we know how to fix it. Hopefully.

So now that I have said all that. I must say that Ellie has been great through this all. She always amazes me with her strength. She has been happy and up to all her old tricks through it all. She hasn't had the energy that she used to and hasn't ridden her bike as much as she used to, but we have still had fun.

Here are some fun pictures of Ellie at Abby's sister's pool yesterday. Just before the latest barf episode that drove us to get today's tests :