LOOK!!

Look! It's a bird....

It's a plane....

It's SUPER ELLIE!!!

On her first real day of preschool.

This is her silly face, it is the face of choice right now.

Things are pretty much the same. We are enjoying or week off of med stuff. We hope the "nice and slow" approach is working. But, we will call Dr. Jennings on Monday to review. Until then we are having a great time and enjoying things just the way they are.

Tomorrow we are going to walk in the MitoAction Family Walk to raise awareness for Mitochondrial Disease. We have met many amazing kids and know many strong families who's lives have been touched my Mitochondrial disease and this is the way we can help. Check out the MitoAction home page to learn more. Our team is called U-Thrive!

Congrats to Liz and Hank on their new baby girl!!

So an NPO kid goes to preschool....

Week one of preschool has been a smashing success for Ellie.

In the words of one of her teachers, she is 'a joy'. It's nice to know that someone else is a as big a fan of our girl as we are.

Ellie still isn't eating and is just barely drinking anything each day. She drinks about 3 ounces of elecare a day along with about an ounce of water. Some nights we see significant residuals in her stomach and some nights we don't. Go figure.

Having an effectively NPO (Nothing by Mouth) kid at preschool was a concern for everyone. Eating is a big part of the day in a half day preschool since snack is part of the the schedule. What would she do if she can't eat? Sit in the corner with her finger in her nose?

Come to find out, at this preschool, in addition to having some great teachers who seem to 'get' Ellie, their daily schedule is built to have a 'free form' snack on the fly. Whe she is ready to eat she can but for now she can keep on moving striaght past, or, as one teacher suggested, stop and have a 'special snack' of ice chips. Gotta love professionals.

So this worked out the typical days at preschool, but what about special events like birthdays?

No need to worry. Leave that one to Ellie, (who is not quite 3 1/2):

Yesterday was a birthday for a child in her class. The parents brought cupcakes. Even though she doesn't really like sweet things, she loves the idea of cupcakes and had even eaten a tiny bit in the past.

We were all were dreading this and Abby and I have discussed this with her teachers about ways to talk about it and distract her. we were all prepared for a meltdown when she couldn't eat just like you would expect when you tell a preschooler that they can't do something that everyone else is doing.

Come to find out that when the cupcakes came out, Ellie looked at her teacher and said, 'I like cupcakes. But my belly isn't ready for them yet. I think I will have some milk and some ice chips instead.'

She isn't 3 1/2 yet! At 36, i would be screaming bloody murder for my damned cupcake but Gut Girl gracefully took a pass and moved on.

Unbelievable.

Morale Booster

With all of the lousy news that we have dealt with this summer and in the past few weeks, someone asked us the other day how we get through the long process of getting Ellie well again?

To this I offer exhibit A, Ellie's first day of preschool:

She is, quite simply, a glorious kid.

That goes a long way to offset the malfunctioning gut.

Patience

We are home. Just barely, but we are home.

The stomach residuals are back.

Why this is happening is open to speculation. It may be the case that liquid isn't passing down from her stomach to her small bowel. Ot could also be the case that things are sloshing up from below. These are two crappy options and the cause has given us more than a little bit of anxiety over the past 24 hours.

Is it simply her gut taking an extrordinarily long time to wake up?

Is something still wrong anatomically that wasn't fixed in this past surgery? Is there a section of her bowel that is 'stupid' and screwing things up for the rest of her bowel? If it is anatomical, can this be 'fixed'?

Or is it one of those mysterious things that causes some short gut kids to simply stop eating altogether? we know some kids with short gut that fall into this category, an example of a case where knowing too much isn't always a good thing.

We are a long way from making any calls about the reason behind this slow recovery but we are learning that this recovery is taking a lot longer than it has in the past. We have been in touch with her surgeon this weekend and are already making plans for the next steps.

If only it could have been a simple fix...

So we are home. For how long is anyone's guess.

Just in case, we spent a glorious day today having home time with as much fun as we could squeeze in.

Let's try this again

A tiny residual at midnight and none at 8AM.

It seems that things are getting in gear and the lack of things in her stomach this morning is a very good sign.

We are heading home today and will manage her bowel recovery from home.

Spoke too soon?

Ellie did great with the ice chips and sips yesterday and last night we hooked her up to her enteral pump to pump in a ounce over night. Yes 1 ounce pumped in slowly over 7 hours. At 4:30 she woke up, pooped and asked to be vented.

Her belly pushed out over 2 ounces of fluid. Not good.

This means that she held on to the 35 we gave her and either produced another ounce of her own fluid or more likely fluid that was backing up in her intestines pushed backwards into her stomach.

Still not good.

So now we wait for rounds to discuss where we go from here. But most probably it will NOT be home.

I can't help feeling that this is our fault, we told everyone we were going home, we told Ellie, we told our nurse, visiting friends, and had ThriveRx come in and do a evening teach on how to do antibiotics at home. We should have known better.

HOME is the worst 4 letter word I know. If you say it too much you will regret it.

Ellie and I are hanging out watching Sleeping Beauty, again. She is happy and currently pooping, so things aren't all bad.

Doing well and going home?

Ellie has been doing much better in the past two days. We got the right sensitivity for her UTI and weened her off of all pain meds. She has been up and moving. We took a big wheel ride to the garden and playground yesterday and today she has spent most of her time in the playroom.

We talked to Dr. Jennings about "the plan" for her feeds. He wants us to do as much by mouth as we can. Then supplement with the feeding pump. The goal at this point is not to ramp up her feeds and get off of TPN, it is let her bowels wake up and recover from the insult of the stricture. After a week or so we will start pushing and see how she does.

We thought we would be doing a slow ramp up over the weekend and then go home on Monday, but after talking to Dr. Jennings this morning, we are looking at tomorrow morning as our possible discharge.

We were surprised but also very happy. Hospitals are dirty places and we would like to get out of here before she picks something up. We do have to go home on IV antibiotics for her UTI. IV antibiotics since she is not really eating yet, and because at this point she may not absorb enough to make them work. This means we need our first "teach" on how to do antibiotics at home. Everyone was shocked when we said we didn't know how to do it and I think we have knocked on wood 50 times already today when we explained why.

Ellis hasn't eaten in 3 weeks so her bowels are going to need time to get moving, and time to regrow all that fantastic short gut lining of her small bowel. ( the absorptive layer of short gut bowel can be 3x the thickness of typical bowel) Give her a few weeks, and assuming this surgery was successful, then she should be back to her old self. I am very excited to get her home and do the recovery at home.

School starts next week and we have not been mentioning a date since we didn't' know if she was going to make it. But things are looking like she will be starting school with all the other kids. She may not be eating, but she will be there.

I will update when we know more.

Progress

In the past two days we have seen steady progress in Ellie's recovery.

She is very close to being disconnected from her bionic partners altogether. Her epidural is gone, the heart and breaqthing monitors are gone, her foley catheter is gone (leaving just a uniary tract infection as a souvenir), the NG tube in her nose is gone (leaving just a nasty red sore on her nose):

,

The drainage bag for her g-tube is scheduled to be removed later today. If we can get away from the post-op iV fluids during the day and back to good old TPN at night, we could, in theory have a FREE GIRL sometime soon.

On the GI front, she seems to be tolerating her own digestive juices well which is a good sign and has even had some ice chips.. No bloating or distention. We think that a day or so of clamped g-tubes with nowhere for the fluids to go but down and we could start clear fluids- the first step towards feeding again.

This means that she can also brush her teeth again and use the fancy mint flavored sponge lollipops to wash her mouth.

Pain is still an issue and we are struggling a bit in the transition from very low doses of heavy narcotics like Dilaudid (which I have learned is 10 times stronger than morphine and 5 times stronger than heroin) to more conventional pain meds like tylenol. The trick is timing the weaning process to keep her happy. This sounds easy but sometimes pain comes at the four hour mark and sometimes at the 7 hour mark. The good news is that, for the most part, she is on long intervals between heavy meds.

Onward and upward. Gotta go play princesses with my girl.

Poop For your Birthday

Normally this does not sound like a good birthday present, but for Gib...It was perfect.

He said that Ellie woke up this morning, farted and pooped. YAHOO! This means the NG tube in her nose can come out and she can start taking little bits of clears by mouth. This will is a huge step in the healing process. Sounds like a great present to me.

Happy Birthday Gib!!!

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.