Sunday, November 27, 2016

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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Monday, November 7, 2016

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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Wednesday, October 5, 2016

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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Sunday, September 18, 2016

The birthday girl! Happy 7th Birthday, Ellie Bear

I wrote this post last week, but blogger decided to delete the 2 posts that I wrote.  Anyway, last weekend we celebrated Ellie Bear's 7th birthday a little early.  Her birthday was actually this past Friday, but we originally thought that she would be in the hospital after the surgery that has been canceled.

Ellie is fixated on school buses and it is actually one of the only words that she can say clearly so we opted to go with a school bus theme birthday party.  We kept the party small - just a few close family friends.  I went a little crazy with clipart and picmonkey.com when it came to invitations and "thank you".


I had the brilliant idea of decorating stop signs with markers and glitter glue.  A big mistake.  I ended up covered in glitter glue after Ellie decided to use her teeth to remove the cap.  Girlfriend sent the glitter shooting across the room.  Of course, The Bear was covered head to toe in sparkles.  Still, she had fun and that is what counts. 





One of our family friends showed up with two Mickey and Minnie Mouse balloons.  You would think they hung the stars.  Ellie dance around while humming to herself.  


Now the cake was a big hit.  Target has delicious cakes with really tasty icing.  My little chocolate monster was thrilled to have chocolate cake with chocolate icing.  I got the school bus off Amazon and Ellie was very pleased.  She couldn't believe that it was finally her "happy birthday".


Of course, Ellie stole the cake server and used it as her own personal spoon.



For the party favors, I make school buses using Hershey nuggets.  You can get a free printable from the blog like a pretty petunia.

 (Thank you tags using clipart and picmonkey.com)

Overall, it seemed that everyone had a great and Ellie was exhausted after wards.  So were Andrew and me.











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Sunday, September 4, 2016

A quick update on Urology/GI procedure plan

When I last left off, I mentioned that both urologists confirmed that they could perform Ellie's cecostomy and tube placement for Monday Sept. 12, but they wanted to discuss the surgical approach.  Well. . . I was confused because at our long awaited urology pre-op appointment, we decided on a laparoscopic approach with the possibility of needing to open her abdomen up completely.



Of course, the other surgeon was out of town so they couldn't not discuss immediately.  I gave 2 weeks and left a message this past Monday with the nurse.  Tuesday, I get a phone call from Ellie's secondary GI specialist, the one who performed the colon manometry back in June. He tells me that the procedure will be done in interventional radiology [IR] where they just "pop" the button right in.  It is less invasive and the hospital stay is closer to 48 hour as opposed to 4 days.  Obviously, this is all good, except, at our urology appointment in July, GI relayed to urology to not do it through IR because her colon may be too floppy from being stretched out.  What?!  So do they bring her into IR and if it doesn't work we need to relocated to the OR?

Friday approached and as usual, I never heard back from the urology nurse.  Dr. McQ, the actual urologist calls me personally.  Her surgery on 9/12 was CANCELLED back on Tuesday since her procedure will be performed in interventional radiology and not the OR. She assumed that I knew this already.  Urology is no longer in charge.  GI put in the orders.  Radiology is taking over. If GI was going to put in the orders, why didn't he do so in June?!  I immediately called GI and then googled the number for radiology.  Radiology never calls back, but GI does. . . only it is the other GI's nurse.  According to her, IR is booking into late November, early December.  I may have lost it.  I spent the afternoon angry crying.

first day of 1st grade


Timeline:

June 16th - referred to pediatric surgery by GI, then Dr. C in urology
Dr. C out of town, then takes another week to look at her case
Referred to Dr. McQ in urology and she is out of town
July 24th - urology appointment, tentative surgery date because need to coordinate with Dr. S
Dr. S it out of town so more waiting to coordinate
Both urologist can do the 12th, but need to discuss approach, Dr. S out of town
August 30th - GI calls to change plan
Sept. 2nd - surgery cancelled
No new date yet.

She lost her front tooth!


This is ridiculous!  If she gets booked in December that is SIX months since the ordinal order was put in.  SIX MONTHS.  My daughter is in pain.  PAIN.  She is uncomfortable and only goes with a special enema that I have to constitute myself.  We can only give those enemas twice a week which is not enough to help her.  Her medications do nothing.  She spikes fevers because of this.  She had to have a urinary catheterization due to being unable to pee and screaming secondary to constipation.  This is unacceptable.  I will be rattling radiology's cage.  I will cry and beg for my daughter, but it isn't like I can personally create an opening in IR.  I will contact a patient advocate in hopes of filing a complaint.  Other than that, all I can do is scream and watch Ellie suffer for another 2.5 to 3 months while they all had their thumbs stuck up their *sses.  It seems they all forgot that a real human child is involved.




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