All I want for Christmas is....

Flagyl.

Yes, the Bacterial Overgrowth is back. Lots of gas from both ends, smellly poops and not appetite-all classic signs that the bugs are growing in places where they shouldn't which causes gas, malabsorption and other troubles. Fortunately we got our holiday shopping done early this morning and had the prescription filled by lunch.

We don't like the thought of needing to cycle the antibiotics but with her current plumbing and lack of the control valve to keep the bugs in the proper place, we are coming to realize that rotating drugs is probably in order for a while.

We are all very excited for Christmas and will try and post pictures of Ellie's extravaganza tomorrow.

In the meantime, here is her Christmas card picture for this year:

Merry Christmas.

And, as Ellie will tell you, Happy Hanukkah and Kwanzaa.

Santa!

Our town has a wonderful tradition before Christmas where Santa rides around town on a fire truck making stops in various neighborhoods over the course of three nights. They have been doing it for 45 years now and this is our second year maing the trip to se ehim as he makes his tour.

Christmas is a very bug deal in our house right now along with Chanukah and Kwanzaa since Ellie is an equal opportunity holiday celebrator. So we made sure to track his trip tonight and even went so far as writing a letter to the big man which she delivered when she was brave enough to sit on his knee.

Uh, Mom.... Are you sure this is okay?

Here's my letter.

A very serious conversation. Santa took lots of time to hear all of the details.

I'm still sure about this whole thing.

And away he goes.....

Do you sthmell it?

In the past few weeks Ellie's bowels have started to act funny, make a lot of gas, and around Thanksgiving, her appetite went to zero which is a generally bad sign. She has been quite happy as usual but told us very clearly that she 'didn't feel like eating today'.

We spoke to Childrens’ early last week and the two sides of her team, surgical and medical, with a healthy amount of input from Abby and I, suggested two parallel approaches to treat her new symptoms: a round of antibiotics to treat possible overgrowth in her small bowel and a contrast study of her bowel to rule out any anatomical problems like a stricture, narrowing, or obstruction like we saw in August.

On Wednesday we started a seven day course of Vancomycin to treat her gut bugs. 'Vanco' is a really heavy hammer to swing since is usually reserved as a drug of last resort to treat particularly nasty resistant bacteria. But it is very effective.

Then on Friday Ellie had yet another upper GI study done at Children’s. We have honestly lost count of how many of these she has had but this study involves a baseline x-ray of her belly (a KUB for Kidney-Ureter-Bladder) followed by a trip to the fluoroscopy room where they put her on a special x-ray table that has a camera that lays over her in a sort of tunnel. After she is in the machine with her head laying on a rolled up towel watching a Kipper DVD, they attach a syringe of barium to her g-tube and inject it into her belly. The machine takes a lot of pictures and we all can watch the dye move through her bowel on a big video screen.

Then we wait 30 minutes and have another x-ray taken to follow the dye. Wait. Repeat. Wait. Repeat. Use fluoroscopy to manipulate her belly and try to move the dye and her bowel. Wait. Repeat.

Ultimately the study should end with the dye passing through her entire bowel and a big chalky poop. It should happen this way. But as with all things Ellie, not much happens as it should.

After four hours of very patient waiting, and a very enthusiastic Ellie running to get her next ‘picture’ taken of her belly things still had not moved through.

To possibly advance the agenda I suggested to Ellie that she try pooping. Instead, as we went in for the 5:00 PM last attempt at seeing things pass, Ellie decided to fart for us. A possible sign that things were moving, I asked her:

“Ellie, did you fart?”

“Yes,” she said with an angelic big grin. Proud as can be she then asked me “Do you sthmell it?”

I think that the radiology technician may never recover.

The study told us some things about Ellie’s gut. We think. UGI studies are a science but also have a huge amount of art to them. The dye is apparent and you can make some sense of what is going on but since Ellie’s plumbing is far from typical, you really need to know her bowel to understand what is going on. It takes a very good radiologist with some input from us and often some advice from her surgeon to truly understand what is going on.

What we found is that there likely isn’t an anatomical cause to her symptoms. This is very good news for us since scarring, healing and other things could cause the problems to come back even after her surgery in August.

The study did show us that her bowel is still dilated. This could be a return to the situation that she was born with and needed an ostomy but since the dilation is uniform and showed good motility it is more likely part of the dilation that we have been told is part of the expected adaptation of her bowel to overcome its lack of length. If the bowel cant gain absorbtive areas by growing longer it often expands in girth to extend the surface on the inside.

This is our hope.

The appetite is back and even after TPN last night Ellie woke up wanting breakfast. This is music to my pancake-making ears even if she only eats a little bit before moving on to eggs and ham.

Christmas is in full swing and we are hoping that things stay smooth through the holidays.

The third floor

Ellie and I had to go to Children's yesterday for a blood test and to get more Omegaven. On the way to the basement while we waited for the elevator, Ellie looked up at me and told me, "I don't like the third floor. That is where they put the tube in my nose."

The third floor, for those of you who haven't been to CHB, is the floor with the operating room, where yes, they do put NG (Naso-Gastric) tubes in her nose as part of surgery.

Ah, the joys of a very aware kid with medical issues. When we discussed that we also see Dr. Jennings on that floor, things got better very quickly.

Sometimes you have to wonder what she really remembers of all of her time in the hospital.

This goes along with her Thanksgiving discussion with her Grandmother about a picture that she drew in the hospital in September that is framed on the wall: "I drew that in the hospital when I was in the big fluffy bed with the table that goes across."

I'd like to know what that shrinks would say about her hospital stories.

A Post Free Month

We realized yesterday, with a little bit of help, that it has been more than a month since we have updated this blog. We would like to say that this is because our journey with short gut, tube feeds, Omegaven, central lines, g-tubes, and the rest of our average day has come to some sort of and end. Unfortunately, we can’t say that. In fact in some ways we are further away from an end than we have been in the past.

Apple picking

Hiding in the apple trees

I guess that things are so busy right now that updating this blog just falls off the list and by 10PM we just don’t have it in the tank to update things. I guess it is very similar to what got me into this blogging to begin with: I hated telling stories about Ellie and her condition without any emotion after the third phone conversation. The blog was great to share a best shot at an update and give everyone the best version. Now writing about Ellie’s very, very slow progress seems to be the same kind of thing.

Finding that perfect pumpkin

Her progress has been slow but good. We are back down to only 3 nights of TPN/Omegaven and only 1000mls a night. She has also been eating really well. We have found that when Ellie is eating well and tolerating her food well, we feel like the sun is shining even when it isn't. When she isn't, well then there seems to be cloud over everything. Lately it has felt pretty sunny around here.

Some highlights of the last month:

Potty Training- Ellie has decided that the toilet is a great thing all of a sudden. She rarely poops in a diaper anymore and is working on the pee when she isn’t overwhelmed by the IV infusion overnight. Unfortunately for us, that means one of us (most often Abby because Ellie likes to poop with Mom) is up for the day most days around 5AM. But on the upside her bum is very happy to be clean and even the most acidic short gut poops aren’t too bad for her. Now if we could get her to move to the toilet for peeing we would be in a really good situation

Fetch at the beach

Halloween- This year Ellie was a lady bug for Halloween. She really wanted to look like a "Real" lady bug so we broke out the sewing machine and turned her into a lady bug.

Pneumonia- For the last month we have been dealing with a nasty cold that has made the rounds among all of us. Ellie got the worst of this and last week ended up with what we like to call ‘running pneumonia’ last week. Running because even with lungs that ‘crackle’ she never slowed down, not once. Through the whole thing she lost a pound, one of those great pounds that we were so proud of her gaining after last summer.

We also learned that even bronchitis/pneumonia is a serious risk for kids with a central line because of the possibility of the bugs migrating into her central line. It is such a risk that we spent a night last week in the ER getting line cultures drawn and starting a cocktail of IV antibiotics. In by 7PM out by 3:45AM. Have I told you how much I love the portable DVD player? All cultures were negative and she back to her old self.

Pre-School- Ellie absolutely loves schools and the three mornings a week that she and her nurse Karlene go to pre-school are the highlight of her week. Even though she felt fine, her progressing pneumonia kept her out of school for a week and a half this month. We just couldn’t ask parents to keep their sick kids home to protect Ellie and then send her to school with an awful cough. Today she went back and never missed a step.

Over all she is doing great and very excited for the holidays. We are heading up to Maine for the first time since the middle of this summer. We promise to update more often!

Yup, she's a Brogan alright

At 6:15 tonight, Ellie and I adjourned to the bathroom for her evening ritual: a good try at a poop on the toilet with a book for good measure, wash hands, brush teeth, rinse with flouride and off to get hooked up for her evening infusion and bed.

I had gotten one sentence into My Brand New Potty when she stopped me and told me, "No daddy. When there is an exclamation mark at the end, you need to Yell! Not just talk."

She is 3 1/2 and already a grammar Nazi with a need to read a book to poop.

Yup, she's with me.

Today she weighed in at 16.09 kg (35.4 pounds). That is a pound above her weight at clinic last week when we made the plan to go to 4 nights a week of TPN and 3 nights of saline. She is noticeably heavy. All good signs.

We hope that this aggressive weaning will encourage her appetite and thirst which will then move things along and let us wean some more. We will give this a few weeks and see how it goes but for now we are back to three nights a week without our old friend Omegaven. It is remarkably liberating to only set up the bag of fluids without the splitter or the Omegaven pump.

Place your bets, place your bets. Says my daughter.

Update October 4

We realized tonight that it was September 12th the last time we posted any news. That is the result of a combination of things but mostly due to a combination of a busy new schedule, some work travela nd a nasty round of colds, we have been choosing to do other things like sleep when we have time rather than logging our lives. So shoot us. Winter is coming and then things will be cold, white and slow. Also I think that things were going so well we were afraid to put it in writing for fear that we would jinx it.

Not so sure of What to Think About the Scare Crows

School has been great for Ellie. Tues, Thursday and Friday Mornings she and Karlene get dropped off at school. Ellie goes to class and Karlene hangs out a full floor away but just a phone call away, in case anything goes hinky that the teachers can't deal with like a problem with her g-tube, her belly or worst of all, her central line. The kids are great and it is wonderful for her to get out and see other kids and teachers.

Apple Picking with Friends from Florida

The school also sent home a letter to all the other parents letting them know about Ellie and her short gut. It explained that a GI bug is a very big deal for her and asked the other parents to please be extra aware of this and not send to send their kids to school if they may have a bug. It also asked that the parents let the school know of any illnesses so that they may inform us. Them we will have the option of not bringing Ellie to school that day.
The director then will let us know as soon as she knows when a kid is sick, even telling us a week ago about a kid who had thrown up while Ellie was in school to give us the opportunity to come in and take Ellie home. We have also gotten a call a couple of times the afternoon before Ellie is scheduled for school with a health update which has led us to keep her home just once so far. Stomach bugs are a bad thing these days and we would rather have one day of home school than a free inoculation of gastroenteritis. As always, her teachers are very good and brave (even changing short gut diapers) but we are all happy that Karlene is there just in case. Peace of mind is priceless.

Ellie continues to ramp up in her feeding and less than a month after being discharged from Children's. She is back to eating a limited diet of soft foods, drinking about half of the formula that she was drinking before her troubles this summer and has surprised all of us by gaining a surprising amount of weight. She is 1 1/2 kilos (3.3 pounds) heavier today than when she was released in September. This week her weight gain earned her one night a week without TPN. We are starting on the road to a TPN free life. Again.

Touch a Truck Day

We have been leery of putting her on her feeding pump because it doesn't provide any feedback as to when she is full, like oral drinking will. We understand that constant exposure to formula is the best bet to encourage intestinal adaptation but right now we are still recovering from her dilation and don't want to aggravate her bowel with an unrelenting pump inflating her bowel. One of these days we will get brave and start the trickle of feeds from the pump but right now she is doing quite well eating and drinking when she wants to.

Perhaps the best news is that she is finally pooping quite regularly for us. Five or six times a day is the norm which, believe it or not, is thrilling for all of us. Lots of poops means things aren't backing up and her dilated bowel is likely recovering and getting its strength back. We will run with this for a while and then can start considering methods to slow her poops down but for now, let the poops come!

Other than that we are dealing with regular kid things, timing flu shots, and having great fun with our girl. Things are slowly returning to normal.

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.

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.