Happy Holidays!

On behalf of the Ellie Bellie Bear clan, I would like to wish you all Season's Greetings and Happy Holidays!  May your holiday season be filled with love and laughter and family.  May all of those who are traveling be safe and warm.

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The Recovery - cecostomy tube

Yesterday was a bit rough, but for the most part she was doing well.  First, I forgot to mention a little snafu during the surgery.  Typically 2 sutures are put in to hold the colon to the abdominal wall until scar tissues is built up.  Apparently, there were "technical difficulties" (doctor's words, not mine).  The two sutures didn't "deploy" (don't ask me what that means).  He was able to get one suture in.  The surgery goes "well normal one of the sutures pops out so it is okay to have only one".  Um, if one pops, what happens if her only suture comes out??

Yesterday was post-op day 1.  Her abdomen kept getting distended and quite hard.  The doctors were a bit concerned, but were relieved that she showed no signs of fever.  A fever and distended abdomen can point to an infection or the beginnings or peritonitis. She also wasn't peeing on her own.  She has a history of urinary retention, but we hadn't really had any issues with it.  She had to be catheterized 3 times.  Each time she was cathed, her abdomen would get a little less distended.  She also stopped drinking so we had to start IV fluids. The most exciting part of yesterday is that we got to escape the room and go for a little wagon ride.  She was pretty subdued, but I could tell she was relieved to have a change of scenery.

As of this morning, she is doing much better.  She peed overnight on her own!  Her abdomen is also much improved.  Less distended.  Less firm.  More active bowel sounds.  She is still refusing to drink, but we may stop the IV fluids to see if she gets more thirsty. I am hoping to take her for another wagon ride and see if the playroom is open today.  I think getting up and about will help with her recovery.

We are here until Sunday (surgery was Wednesday).




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Surgery - cecostomy

Well it finally happened!  Today Ellie had her cecostomy.  She will be in the hospital for the next 3 to 4 days.  The surgery went well with no complications.  She is in pain which is being managed with pain medication, but as soon as it wears off, she becomes quite combative.  Here's to hoping that this post-operative period goes smoothly with no complications.

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The Pre-Surgery Debacle and Ridiculousness

The Pre-Surgery Debacle

Friday 12/2:

This is the big day!  The day for bowel prep.  A day where we administer a gallon of GoLytely through a NG tube in hopes of clearing out Ellie’s colon in preparation for Tuesday’s cecostomy.  Or so I thought.  Friday morning we show up to patient administration for hospital admission.  We had seen Dr. R in GI the afternoon before and we should have been good to go. Only to discover that Dr. R never put in the orders for admission.  Dr. R is, of course, now out of town.

After much calling around, one of the GI nurses was going to put in the orders.  So we waited.  And waited.  Said nurse went into a meeting first and then got around to putting in the orders.  We waited some more. They neglected to call the unit to get a bed.  More phone calls.   They get a hold of Dr. S who is actually the doctor who performed Ellie’s colon manometry and recommended the cecostomy tube placement.  Apparently, she doesn’t need to be admitted on Friday.  Saturday is good enough.  So after pulling Ellie out of school and wasting an entire morning, Ellie and I head back home.

Saturday 12/3:

Ellie gets admitted!  For real this time.  I was apprehensive when we showed up, but it all went smoothly. We get the NG tube into her.  She doesn’t fight us much.  We watch Mickey Mouse’s Choo Choo Express 12 times while coloring in a Color Wonder book for hours.

Plus, she starts to poop in the late evening!  Yes, of all the things to get excited over.  Pooping.  A bowel prep is loads of nastiness fun.  The goal is to be literally pooping water.  As in clear fluid.  That is why we need Monday to be a day of “drying out” so to speak.  As I am helping the nurse change her sheets for the 3rd time, I discover a few interesting orders in Ellie’s patient chart.

Jello. Popsicles.  Broth.  Water.  Juice.  All of those are considered a part of a clear liquid diet.  Ellie was to start a clear diet as soon as the bowel prep started and continue until Tuesday.  However, some genius resident decided to change that order to nothing by mouth, NPO, as in she can’t even drink until after her procedure.  I had the nurse pass along to that resident that  I will be not following that order.  I am not a big fan of detrimental health effects related to dehydration.  Plus, what is the point?  She is getting GoLytely pumped into her stomach.  The whole idea behind NPO is to keep the stomach empty.  Score 1 for mom because she changed the order back to Clears.

The whole plan, to my understanding, is that we would go in for a bowel prep Saturday - Sunday and then get discharged Sunday afternoon.  Tuesday morning we would report to radiology.  Apparently, according to the orders in Ellie’s chart, we would not be going home until after her surgery.  We would get to hang out in the hospital just for fun for Sunday and Monday night even though Ellie had no medical need to be there.   There was a theory that this decisions was related to insurance. That if they discharged between the bowel prep and the colon surgery, insurance wouldn’t cover the bowel prep.  

The resident called the case worker.  She couldn’t help.  She called financial services.  They never called back or weren’t even in the office with it being a weekend.  I call Cigna.  I explain the situation and Cigna informed me that there is no reason why we couldn’t be discharged to home and return Tuesday.  I had her check with her supervisor who confirmed.  I also have a nice reference number and a note in Ellie’s Cigna account too to cover all my bases. 

The on-call GI doctor finally stops by the hospital room as we are watching Mickey Mouse’s Choo Choo Express for the 21st time (I am not exaggerating) and playing with sight word flashcards.  Apparently, she thought we were staying through the procedure because of 1. Insurance and 2. Because Dr. S said we might as well just stay.  Um, right.  The on-call GI doc calls Dr. R who is out of town who says “oh yeah, she can go home”.   

Finally!  Discharged to home on a clear liquid diet until Tuesday.

Tuesday: 

Surgery day. . . or not.  We presented to radiology at 7 am today for an abdominal x-ray.  This is to look at the state of her colon.  Is there too much fluid in there? Too liquidy?  That answer to that question is, yes, she is too liquidy.  So surgery has been postponed to tomorrow provider her colon is in the right state tomorrow morning. 

I nearly cried when I heard.  We have been waiting 6 months for this surgery and it is delayed again.  I am anxious that we will show up tomorrow and hear the same old story.  That her colon isn’t in the right state to proceed.  This entire process has been ridiculous!  At this point, it would have been much easier to have done it back in September laparoscopically.

Please pray, thinking positive thoughts, or send positive vibes that all goes well tomorrow.  That her colon is okay and that we can proceed with the procedure.

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Surgery Update

Surgery is in a little more than a week!  Finally! Earlier this month, I had a consult with both the nurse and Dr. B from Interventional Radiology [IR].  It all went well and several of my questions were answered.  The biggest one involving the "state of her colon" where if her colon is not in the right state, the surgery is postponed or even canceled.  The doctor does want her completely cleared out.  As in no stool in the gut.  However, there can still be liquid in the colon and this is dangerous.  Air is pumped into the cecum (upper colon) during the procedure and if there is fluid, perforation of the gut is likely.  So it is important for the colon to "dry out".  Upon clearing out the colon, Ellie can only be on a clear liquid diet until after the surgery.  This is to prevent the formation of stool which would defeat the purpose of the bowel prep.  Fortunately, from past experience, I know that we can get Ellie cleaned out.  I am not looking forward to the clear diet part.  How to you reason with a developmentally delayed child that she can only have water, juice, broth, and jello?

Of course things couldn't be easy scheduling-wise.  After all, nothing has been easy about this journey so far.  A journey that started nearly 6 months ago.  Gastroenterology is in charge of the bowel prep.  Interventional Radiology is in charge of the cecostomy procedure.  GI wants to admit her on Friday for an overnight hospital stay to administer a gallon (at least) of GoLytely through an NG tube (a tube that goes from the nose to the stomach).  Surgery would commence on Monday.  However, the GI doc is out of town on Friday.  We didn't know this until after the office visit was scheduled.  It does look like we can have the visit on Thursday afternoon and still be able to admit her on Friday as planned.

Surgery is/was scheduled for Monday 12/5.  I get a call earlier this week.  Dr B is not going to be in on Monday.  Surgery is moved to Tuesday 12/6.  To say that I am annoyed is an understatement.  I know that pushing it back one day doesn't seem like a huge inconvenience, but that is one more day that we have to starve Ellie.  No food from Friday - Tuesday post-surgery. We are starving a child who has failure to thrive.  Where each pound gained has been an ongoing battle and now we deprive her of food for over 4 days! I am trying to negotiate with IR and GI, but with the Thanksgiving Holiday I am still waiting.  My hope is that they will let her eat Friday.   Or that the GoLytely will make her feel full on Friday and Saturday.

Eight to 10 days later Ellie will have a post-op appointment with GI.  After this visit, we should be able to start the antegrade enemas.  Basically, we administer a ridiculous amount of either water, salt water, or ducolax crushed into water through the cecostomy tube.  This allows us to clear out Ellie's colon from the top rather than going rectally.  Six to 8 weeks post-op, Ellie goes into day surgery for the placement of a permanent catheter called Chiat Trapdoor.  After that, we should be good for 11 months which is when the catheter will need to be replaced.

I am nervous.  Nervous about her pulling it out.  This must be a common thing because at the consult, the first thing the IR nurse talked about is what to do if the catheter is pulled out (you insert a feeding tube into the stoma and then call IR for tube replacement the next day).  I am nervous about the dressing changes.  She is going to be so sore and I know she won't want us fiddling with it.  My thought is that it will take both Andrew and me to perform the dressing change.  Drew can hold her down because he might gag when he sees the cecostomy.

I am hoping that the next time I update y'all Ellie would have had her surgery.  Please pray or send positive vibes that her surgery does not get delayed. . . again.  That her bowel prep goes okay and her colon is in the "right state" so that surgery can proceed as planned.





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Communication or Lack There Of

Will she ever have a conversation with me?  Will she be able to order off a menu at a restaurant?  Will she ever be able to tell me about her day?

These are the questions that circulate through my head on a regular basis.  A few days ago, I came across this blog post: loving a child who cannot speak and I really identified with it. You see, Ellie is predominantly nonverbal.  She has a handful of words that for the most part, only I understand and even then, it must be paired with a sign.  So I suppose you can say that I don’t understand her verbally, but I sometimes understand her signs.

Will she be able to tell me who her best friend is?  Will she be able to tell me if she is being teased, bullied?  Will she be able to contact someone in case of an emergency?

Ellie communicates via sign language and vocalizations.  Her signs are rudimentary meaning they are gross approximations of actual signs from American Sign Language.  In fact, some of them look nothing like the ASL sign at all.  She also makes up signs.  This leads to great frustration - both for Ellie and myself.  What does she want?  What does that sign mean?  She attempts to vocalize if she knows the sign.  If she doesn’t have a sign, there is no vocalization.

Baby, ball, mama (the most important word!), dada, horse, bus, cracker, bye bye - these are the words that she can say clearly.  The words that are understandable to most strangers.  Words that I am so proud she can verbalize.  Yet, these words will only get her so far in home.  With friends.  In the classroom.  In the world.  I worry.

Will she ever be able to say her own name?  Her address?  Phone number?  What if she gets lost?

It is my hope that with enough speech therapy, she will be able to communicate beyond one word sentences. That she will be able to be heard. Understood.  That she can communicate her personal needs and wants.  Yet sometimes, I find myself in despair.  Lowering my expectations, which is something that I am ashamed of.  Shoot for the stars.  She will surprise us. She will speak. Yet, I doubt and I don’t want to.  It isn’t fair to Ellie. I want to have those high expectations.  I don’t want to limit her.

Vantage Lite.  LAMP.  Proloquo.

The above are communication programs and apps.  Speech augmentative communication devices such as an iPad or a device specific for the production of speech can greatly help a person “speak”.  Communicate.  It has been recommended by Ellie’s teacher and speech therapists that she get a communication device.  The thought is that working on speech, using sign language, and augmenting with a communication device will help Ellie develop speech.  A total communication triad.  I am hopeful because even if she remains nonverbal, she will be able to converse, order food off a menu, state her name and contact information through this device.  The communication device will give her a voice.

Right now we are waiting.  We have applied to various places to get either the Vantage Lite device or an iPad with the LAMP app.  Of course, I hate waiting.  I want the device now!  I am ready for her to have a voice and I imagine Ellie is ready too.  It is time for me to erase those low expectations.  To raise them up.  For Ellie can and will do great things.

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Interventional Radiology Update

If you are new here, you might want to read this blog post first so that it all makes sense.

Radiology wasn't doing such a great job at calling me back so I took it upon myself to call GI. Of course, I wasn't sure that GI could do anything since Ellie's case was no longer under their jurisdiction.  I didn't contact the nurse of Dr. S, the ordering physician, but rather called our primary GI's nurse, K.  Out of all the specialists we see, K from GI is the only one who ever calls back in a timely manner and she knows her stuff.  If anyone could light a fire under radiology's patoocus, it would be K.  Everyone needs a K in their corner.

"hi everyone!"

K called me not even two hours after I left a message.  She spoke to radiology who informed her that they were doing a massive schedule rehaul.  Translation: moving around already scheduled patients so that all their surgery dates will be pushed back, which means they are booking ever farther out.  Anyway, my point is that radiology stated that she would call me the next day and she did.

She just had to take her Nutella sandwich to the bus stop.

Two Friday's ago, I spent 20 minutes on the phone with the Interventional Radiologist's [IR] nurse, C.  In the middle of HEB. Our local grocery store.  In the dairy department to be exact.  It should be noted that I forgot to pick up half the items on the list after speaking with her. Like the ingredients for what I planned to make for dinner that night.  We ended up eating out. Back to the topic at hand, C spent a great deal of time explaining to me how this is all going to go down.  I am not amused.

Someone was very excited to go back to dance class.

First, Ellie will come into the hospital on a Thursday for a contrast enema.  This is supposed to clear her out (yeah right) and allow them to see the exact location of her cecum, the upper part of the large intestine.  Now, I am not real clear on this, but her colon is supposed to be in a certain state for the procedure.  Fully cleaned out?  Partially empty with stool of a certain consistency? I don't know, but let's for full clean out because I know we can accomplish that.  I carefully explained that my child's colon is uncooperative and will probably need a 23 hour hospital stay involving GoLytely through an NG tube.  Apparently, I have to contact Dr. S in GI, our secondary GI doc, to "discuss".  It's like musical specialist phone calls over here.

From Friday - Sunday, Ellie can only have clear liquids.  No solids.  No food.  For 3 days!  How am I to explain to a child who is developmentally 3-4 year-old that she needs to starve for an upcoming procedure?!?!?  They are nuts!  Seriously, unrealistically nuts.  It is like child food torture.  Andrew and I have a big plan - remove all food from the house. Every. single. last. morsel.  All 3 of us will survive off juice and water and jello, but us parents will get take out after Ellie's in bed.  Seriously, whose brilliant idea was this?!  Why not do the clean out from Saturday - Sunday before surgery???

Yes, she took these medical glove balloons to school.  No, they did not return home.

Monday, Ellie will be admitted to the hospital where she will have an abdominal X-ray to inspect the state of her colon.  If everything looks good, she will go over to IR and have her cecostomy with a temporary device (button/tube) placed.  Again, I am not sure if she needs to be fully cleaned out of not because nurse C said that if she is too liquidy, the surgery would be moved to Tuesday.  If on Tuesday she is still liquidity, the procedure will be canceled.  Let's all cross our fingers, pray, send positive vibes, and happy thoughts that this does not happen.  Repeat after me: "Ellie's colon needs to be in a awesome state" or mom will throw a huge conniption fit in the hallways of the children's hospital and will be escorted out by security for her ranting and raving.

Photo: www.nationwisechildrens.org

After the procedure in IR, she will remain in the hospital for a week.  If she does well, she could be released on Wednesday or Thursday.  Take a wild guess as to what I am hoping for.  How will I keep this hyperactive child occupied for an entire week.  An entire week spent in one room.  I'll be climbing the walls with Ellie and start talking to myself.  Oh wait, I already talk to myself.

Now onto scheduling. Because the procedure is on a Monday, we need a Monday opening in the schedule. It also needs to be on a week where the doctor is around for the entire week.  This really limits when we will get scheduled.  As it stands, we are booked for December 5th.  Now for the kicker.  There was a surgical date available for 11/7.  Yes, the beginning of November.  I was thrilled until I learned that you need to have a consult before the surgery.  The earliest consult date was for 11/8.  The freaking day after the surgery.  ARE YOU KIDDING ME?!?!?  It would be nice if the radiologist would, oh I don't know, work her into the consulting schedule.  You know maybe do a 30 minute over book or something.  The nurse is going to talk to the radiologist, but she warned me that it is highly unlikely.  That was over a week ago.  I put a call in to touch base and as usual, I am still waiting.

I am frustrated, but doing okay.  I am peeved that she will now have the procedure 6-7 months after she was first referred for a cecostomy.  I was angry on 9/12 when she was supposed to be in the OR.  Yet, I can't do much other than complain and moan about the unfairness of it.  I can't make a surgery date magically open up.  So now we wait and continue to poorly manage Ellie's constipation the way we have been these past several months.  She has been dealing with the constipation for nearly 3 years and yes, it has gotten progressively worse, but we can make it another couple of months.  I am paranoid and anxious that her colon will not be in the right "state" that Monday or Tuesday and it will be canceled - having to start all over again.  I am trying to get into a sense of calm.  To stop freaking out and thinking about the cecostomy nearly every waking moment.  I need to get a handle on it because I've got another 3-4 months to survive.

In the meantime, I am off to go constitute a special enema in my kitchen in hopes of "uncorking" Ellie's gut.




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